rubytuesday

I've been taking 10 mg of Midodrine 3 times/day since Oct. My BPs are more low than high but occasionally will jump up out of the blue. I graft mine monthly to take to my cardiologist appointments so he can see how they are all over the place (no wonder I am tired all the time). When I was at the cardiac specialist for my follow-up this week, my sitting BP was around 115/64. Then they had me stand up and took it again (it always plunges--only this time it shot up to 148/89). That was a first but I had (with my graphs) notes that described similar symptoms that I get when my BP tanks as when the BP jumps like that. They were going to add DDAVP (but I have allergy to it), then they thought Florinef (but that made my BP way too high and potassium critically low), so they are adding SSRI, Lexapro and gave me sheets of 3 other agents they would be considering if this doesn't work for me. They reassure me there are lots of agents that can be tried. In my experience typically the Midodrine doesn't do enough to keep my BP up (with a goal to get me hypertensive). But on occasion--it seems especially with exertion, it will make my BP a little high--especially on the systolic end.

When I had my follow-up with the cardiac specialist in dysautonomia, I'd mentioned the persistent nausea that really gets bad with near syncopal events or when the BP tanks. I'd had a 90 min. gastric emptying study but the specialist suggested a (?4hr) complete gastric emptying study (with the small bowel follow through) and a gall bladder emptying study. My CT and abdominal ultrasound didn't show any gall bladder problems--just pancreas is fatty and liver has fatty cysts. Specialist said gall bladder can appear normal on those studies but not be functioning correctly, ergo the need for the emptying study. She added the dysautonomia can affect the gall bladder, too, causing nausea (if I understood correctly). I did some reading and seems like there are two sides of the fence with this--some people are found to have dysfunction and have their gall bladders removed only to find the nausea persists (from the ANS failure). Anybody able to share their experiences with this? This specialist was going to add DDAVP to my Midodrine (until I reminded her of my allergy to it), then she said Florinef (which I reminded her was tried in 2009 and it made me too hypertensive and critically low in my potasium. So she is trying Lexapro. She thought my purchasing a cooling vest was a good idea (forgot to ask her for a Rx to claim the deduction on my taxes). I told her summer scares me to death. This time, instead of waiting 6 mos. for a follow-up, I go back in 3-4 (near end of summer so they can see how I did--unless I need them before).

I take Midodrine 10 mg (when I get up at 6 or 7 in the morning, around noon or 1 and the third dose around 5 or 6 in the evening. I looked it up--says takes about an hour and can last 2-3 more hours to raise standing BP. I notice it makes my scalp a little tingly. When they tried Mestinon with me, (I was also taking the Midodrine at the time), my cardiac specialist in dysautonomia told me if I would be doing something that might trigger a faint (i.e. going to church, or if I started to feel the sensation of syncope) to pop a Mestinon--that the Mestinon would begin working within 15 minutes. I couldn't tolerate the Mestinon and I usually didn't have 15 min. to spare once symptoms of faint would begin.

Had my appt. with his PA today. I really, really liked her albeit a resident was doing a lot of the interviewing/explaining treatment plan under her supervision. Unlike my appt. w/ Dr G, there were interruptions once I was in the exam room. She tells me next visit (about 4 mos) I will see Dr G again--that they typically alternate each visit. Again, my issues were w/ nurse who must have been hard of hearing--had to loudly repeat (multiple times) and spell names of new medications. They did not have all my meds entered from the last visit, nor all my allergies and the doctor I saw today started first to add a drug I have an allergy to and then to one that was tried but made me too hypertensive. The doctor decided to try Lexapro added to my Midodrine. Makes me a little nervous since I read that it can cause insomnia, drowsiness and extreme fatigue (problems I already have)--in addition to very vivid dreams. But she was encouraging and gave me three medication reports of other agents they may try if Lexapro is not effective.

He said with my EDS (Ehler's Danlos Syndrome) and the orthostatic hypotension (and the fact that my heart rate was now more typically ranging in the low 60s to low 70s when my BP plunges) that the muscles and veins in my legs are very lax (not strong enough to constrict sufficiently to pump the blood back up to the trunk). I have tried the Rx compression stockings but it is so hard getting them off and on it takes 2 of us, and every time, it pops a vessel on top of my foot that takes months to heal and makes it difficult to wear a shoe (sorry off topic). I also am to keep my legs elevated as much as possible to help prevent pooling. Seeing the discoloration and swelling in my feet and legs, he said I am pooling blood and that salt would make the fluid retention worse (I've got good functioning kidneys). That in turn of course puts more demands on the heart and lungs. In addition, I would have to take a diuretic more frequently to get rid of the fluid (which would drop my already low blood pressure lower). Dr. G ordered the therapy to try to condition/strengthen the legs. Well I could work up to 70 min. in the aquaciser but my legs still are weak when the blood pressure is low. I pump my legs periodically and get up and down a lot to try to keep the muscles toned and prevent clots. If I stand, because the legs are not strong enough to constrict and prevent the blood from pooling/return to the trunk, I am to stand with my legs crossed (as if I need to use the bathroom fast) and/or 'shevel' as he explained it to me--slightly swaying from side to side or front to back which shifts the weight from leg to leg again in hopes to slow the rush of the blood pooling. I am not to stand still, lift, or raise my arms above heart level, bend at the waist or squat or stoop as when I go to stand, the blood pooling rushes to my legs and I risk faint. I've even tried lesser strength compression stockings but they also burst that vein on top of my foot. Another thing the water pills do is make me a little more short of breath. Because of the orthostatic hypotenstion and the blood pooling, I was also instructed not to do the standing and kneeling at worship services. Just sit. Last summer was so debilitating to me and I think my cardiologist was worried something serious may happen if he didn't take charge. He's one of the younger ones in the large group of cardiologists that comes here from the big city but he's really thorough in his research/investigating things. He also told me if I couldn't get in contact with Dr G (altho he preferred Dr. G get things where he wants, then he--my cardiologist will be glad to manage), not to hesitate to call him. Dr G's goal with me is to make me hypertensive (and later work on the hypertension). I'm a far cry from that yet but glad to be going back before it gets hot. After I responded to this post, I wrote down things I was thinking I need to ask when I go back this week.

I did see Dr. G. My cardiologist made referral first of March 2011. His wait list was year long. Both cardiologist and PCP (IM) told me I had POTS. By the time I saw my cardiologist in follow-up mid-Sept 2011, (still not getting any call for appointment confirmation), I was so debilitated from the course of summer (very hot with record breaking highs/high humidity, more syncope while cardiologist had tried many single agents that had not worked, in March he'd stopped the Rx I had been taking so nothing confused issues when I was seen by Dr G). that my cardiologist (who said he knew Dr. G, picked up the phone and called him personally. A few days later I got a call to come in first week in Oct. We drove a lot of hours to get there and were forewarned that we could have a 2 to 4 hour wait but that when he sees you--he sees you exclusively--no disruptions with phone calls or nurses knocking at the door. We got there early since we did not know how long it was going to take to get into the place, so we went to the cafeteria after I'd signed in. It isn't far from his office. I waited over 3 hours (my son was getting aggitated but I had told him this was not unusual). It was well worth the wait. He spent all that time with me just up to the time it's lab closed. My cardiologist had already sent him my records and test results. I keep a graph of my BPs and HRs and print them off monthly. The only thing they did to tell me what was wrong was when I first went in the nurses took my BP sitting, then had me to stand, and then took my BP again. I had OH. He told me looking at my records while I had had POTS, I now had OH and that my ANS was failing. He told me I could anticipate (down the road) the need of a pacemaker and would have fewer warnings of faint. He told me falls were the 4th leading cause of death in elderly/people with this. He gave me restrictions and explained why I was experiencing the things I had. I intentionally wore sandals so he could see my purplish feet during his exam. He told me I pool blood and contrary to what I'd been told to do before, now I have to restrict my sodium (but still keep overhydrated). I think he asked about bruising and I'd mentioned I have had a life-long history of hemorrhaging and that hemeoncologist had 'diagnosed' it as Von Willebrands (even tho I did not have that factor)--the treatment would be the same. We talked about my EDS as having a component in my blood pooling (he is very experienced in EDS as well). He said he knew exactly why I was a hemorrhager and wrote down a lab test he wanted me to have there before leaving (which was why my appointment ended before the lab closed--and he escorted us the back way/short cut). He was exactly right. I have Delta Granule Storage Pool Deficiency. He sent me a letter about 6 weeks after the test, with the results instructing me to have my physician refer me to a hematologist. (I did see a hemeoncologist and I was given yet more instructions--before I have any procedure--even dental extraction, I need platelets infused first even though my platelet count is fine). I found him to be very kind and compassionate. He listened to my questions and my fears. He was very calming. He told me that with this, there is a lot of trial and error but if one thing didn't work there were more things we could try. In Sept. my cardiologist went ahead and started me on Midodrine. Dr. G added Mestinon. I took the Mestinon for over a month and at the same time, he ordered a course of physical therapy (treadmil in aquaciser). The Mestinon made me so nauseous and I started having vomiting and some diarrhea. This was causing me to lose more weight and interfering with my therapy. I'd get through my therapy only to collapse when trying to shower to change into street clothes or be vomiting and stagger out of their shower room to the closest bench and just lay down. I asked Dr. G who should manage these trials. He told me he could or my cardiologist--but added my cardiologist probably had fewer patients than he did. I tried to stay on the Mestinon and called my PCP to ask if she could give me something for nausea so I could continue the Mestinon. (But looking back, the BP was still occasionally bottoming out and the heart rate would go tachy on me--and my O2 sat would drop too low). My PCP told me she would not and that I would have to contact Dr. G. I spoke to his nurse who told me she would relay the message and someone would get back with me. It took nearly a month before anyone called (the nurse for his PA). They told me to stop the Mestinon since it was doing more harm than good and to let it get out of my system, then they would start me on another agent to go with the Midodrine. That was first or second week of Dec.--whole lot of worsening gut wrenching stuff while I still stayed on the Mestinon waiting for their call. It is April and no one ever called to start me on anything else and warm weather is approaching. My BP still runs low on just the Midodrine. I asked Dr. G if I needed to see him again as I was leaving and he said, 'you'll get a blue card in the mail'. (Did not tell me in how many months I should expect that card--3 mos, 6 mos., 12 mos.?). Well I did get that card in March and have appointment this time with his PA this week. I found it very overwhelming to hear all this stuff--excited to finally have something by expert in black and white (only as you can see by the forum, nothing is black and white). I thought of a million questions as we were riding home and over the next few weeks (and now I cannot remember any of them except to ask about these abrupt bouts of sweats where I am soaked, my hair is soaked, my bed is soaked and my pillow that I have to get into shower when strong enough/sometimes just happens anyplace--I was never a 'sweater before'). Also what did he mean my ANS was 'failing'--what happens then and what causes that (but again as you can probably see from the forum--so many tests and theories and studies and opinions and the only thing I can figure out is the other sypmathetic/parasympathetic nervous system may try to take over). I suppose this ANS stuff accounts for my sorely lacking thermoregulation which is why I get suddenly overwarmed in church or in the grocery store that brings me down. I have learned to carry water with me and a cell phone (DS got me one for Mother's Day last year while I suppose I was in denial about needing one). He gave me good instructions as to things I should avoid to lessen risks of faint. Some of those things I had already learned to do out of necessity--not taking hot showers and using a chair in the shower. Even though he didn't run a lot of fancy smancy tests, I had had a general 'neuro' eval (albeit our neuro could not understand my request to get a seated MRI ordered for my 7mm years ago Chiari I, with my EDS, and whose to say the Chiari I isn't larger now or when I sit and gravity pulls--impeding the cerebral spinal flow). The neuro's note that she didn't find anything neurologically was sent to Dr G along w/ the other records/tests. We live in very rural area with no real neuro specialists here. I know it's something I have to pursue eventually but seeing the hemeoncologist was another 2 hour drive for us--he'd also referred me to a collegue, immunologist/pulmonologist/allergist and now I am receiving gamma globulin for hypogammaglobulinemia, plus she found I have vocal cord dysfunction and had to see yet another specialist to scope me and a therapist who specialized in VCD to teach me rescue breathing. All these trips are a 2 hour drive in city--some cites further away. I'd have to do the same to see a neuro specialist in Chiaris--and in getting to a standing/sitting MRI unit in network (which is why that's been on the back burner). DH drives me to appointments and drives for a living and even he has got lost in getting to some of the places. Had it not been for the lab test (and another black and white explanation for the hemorrhaging), that Dr. G had run, I would never had found out these other things. (I knew I had low globulins and selective IgA deficiency and that I failed a pneumonia vaccine challenge back in Sept. before seeing Dr. G. That ID specialist told me I needed gamma globulin and we'd 'talk about it in Dec. at my next visit'. Knowing I had to see a hematologist about this other bleeding problem, I sought out a hemeoncologist who specialized in bleeding but would also be familiar with immune systems treating patients with chemo, I took the ID test results with me for a second opinion--not really knowing anything about gamma globulin and thinking it must not be too urgent if it can wait from Sept. to Dec. Come to find out the ID had known since that March. Once I saw the hemeoncologist and he saw those results, he called to get me into his immunology collegue right away and she got the ball rolling right away. One thing is for sure, getting something from an expert in dysautonomia in writing sure lends credence to your complaints to your cardiologist/PCP/neuro (should they suspect anxiety/depression/malingering--nobody ever said those words to me but I'd wondered in the back of my mind if they don't label a lot of us women this way in their heads). But my PCP and cardiologist especially were very good at checking systems/organs/endocrinology, etc. I'm so grateful my cardiologist didn't give up on me or drop the ball. I am the first POTS pt my PCP is treating in all her years of practice and the second my cardiologist has had in our small town. I'm sorry to go on but IMO, I would be happy to drive all those hours to see him again. I hear his PA is excellent as well. I thought it was very well worth our time, expense and effort. He had told me to call his office in about 4 weeks to get my lab test results and I waited 5 weeks. They told me they weren't back yet. At 6 weeks not hearing from Dr. G, I called its lab to see if they were back yet and they told me they'd been sent to him a week ago. I called Dr. Gs office back/had to leave message for nurse. There seemed to be confusion on their end. A few days before they sent me my test results with Dr. G's letter, I got a letter signed by him thanking me for coming to see him, he was an integral part of my health care team, but more or less that if I needed anything to call on my PCP or cardiologist.. When I had called his nurse to tell her about the vomiting/diarrhea with the Mestinon, she was curt to me and said, 'Well, some people, we just can't get their BPs up. . .I'll get him your message. . .we'll get back to you'. Now that amazed/shocked me since Dr G had told me not to despair if some agent didn't work--they had lots of things they could try (quite the opposite of feeling I got from his nurse). I don't blame Dr. G for that--he probably never knew what was said but I would like to bring this issue up to his PA when I see her this week. I wish you well. I do think he is great. I still am not sure--going a second time and with yet a second set of expert eyes, she may wish to have other tests run. I just take it all in stride.

So glad you went for it and had a wonderful time. You go girl!

I hope it helps you! Summer scares me to death after last year, before learning what was happening to me. I am trying the one I mentioned. They all seem expensive to me but the one I chose was more of a sewn vest (not velcro-ed that sometimes wears and tears and did come with an extra set of packs which are also very pricey). I'm so optimistic that I can at least try to take the dog for a short walk when he's here (DS's dog) or go outside to watch the grandkids play, still sitting under shade tree. If it works, I may try it to go to supermarket (had episode there on Tuesday when it was only warm--not hot at all outside). I suppose that component is coming from being erect for too long a time and the blood pooling that comes with reaching things on high shelves and bending to look at things on low shelves. Doubt that any vest is going to help that but creating a vasoconstrictive action from the start may slow down the pooling. We shall see. I also got a soft helmet (off the auction site you'd mentioned) if all else fails. Sending good wishes your way for a safe summer.

EDS/Vocal Cord Dysfunction, bronchiectasis (sorry if that's already been mentioned)

Never

I had 2 TTT at a reputable cardiac center. Both times my hands arms were down at my side. With my orthostatic hypotension, I am not to raise my arms above heart level for risk of faint.

It is cool but my plunges with the BP occur without warning, leaving me without the strength and cognition to grab those things and out them to use. Sadly, from an insurance provider perspective (and perhaps in reality) it may be just as simple to fall (if it happens) or perferrably lay down. For me, so far, I've been fortunate that the blood gradually gets back to the brain before too long. IMO insurances look for the most cost effective/safe modes and providers who will promote them. Laying down with legs elevated I'm sure is much cheaper than a contraption that has a patent. But I could be wrong in my presumption.

Thank you, thankful. I decided to try the stacool vest (not endorsing or promoting any brand specifically. I've never used one.). It comes with a set of extra packs, zips up and they helped me determine the appropriate size for me. Sure hope it helps so I can walk the dog and be outside to enjoy watching the grandchildren play. Summer just scares me so. I'd never heard of cooling vests until I'd found this group. Thank you all.

I know the question has been asked before but I didn't know if anybody has tried these (I don't want the one that works by evaporation), I would really appreciate if you might be able to share your experience/brand/where you purchased it (some of the links on older posts aren't available). I may need to walk DSs dog this summer (hot and humid summers here). I thought perhaps I could use this to be able to walk the dog. I've got a sling to carry water bottle. There is not much shade around our neighborhood. Thanks to all who can help.

My grandson begged me to be an escort for his class to the zoo last spring. I knew (remembering 4 years ago before my diagnosis) how much of a struggle with me. At our zoo there was not only a lot of walking, but little inclines (some big inclines), few areas you could sit (unless you just sat at the edge of a walk and little shade. I had purchased a wheeled walker with a seat so I could go on leisurely tours, but I knew I would hold the class of little ones up, so I didn't go. I did venture out to our local supermarket yesterday morning, feeling fine; intending to do some serious grocery shopping. I had not made it 1/2 way around the store when the BP started to bottom out. No shelves were cleared that I could sit on and I rushed using the cart as a walker to get to a chair in the photo center at the end of the aisle (I was close and carried bottled water with me). I had my little grandson with me and didn't want to panic him. I just told him I had to sit and rest a few minutes (which was longer than a few minutes and my whole bottle of water). There was a customer standing there when I'd grabbed the chair. Once I sat I was a bit muddle headed/oblivious as the blood flow to my brain was interrupted. A clerk that had seen me at the one end of the store saw me, stopped, asked me if I was alright and if he could get me a drink. After some time I could feel the pressure being back up enough to continue (but still didn't get all the things I'd wanted). As we started to continue with our shopping that customer who had been at the counter must have stayed there to keep an eye on me. She was right there, smiled at me (came up to me) and asked me if I was feeling better. I say if you feel up to it, go for it. Plan for the unplanned. Borrow a wheelchair or wheeled walker with a seat if you don't have one. I also have a sling to carry water in so I have hands free and my walker has 2 baskets. But at our zoo some of the 'houses' are not very accommodating to strollers and wheelchairs so unless you trust people to leave it parked and still be there when you get out, you may not get to go into those places. When I'd gone years ago, I stayed out of those 'houses' to guard our stroller. Drink, drink and drink. Have fun.

It took my condition 2 1/2 yearrs to progress with cardiologist (mainly) and PCP (IM--somewhat) working on figuring things out. At that point they both recognized the POTS and my cardiologist referred me to cardiac specialist in dysautonomia. The wait list was year-long to see the doctor and my cardiologist insisted that I see the doctor (not the PA). By the time the cardiologist saw me in follow-up a few months later (end of summer), he'd seen what effects the summer had on me and picked up the phone and called the specialist's office (wanting either to see me--just see me). To our surprise, the cardiac specialist saw me himself--they called me within a week of seeing my cardiologist and scheduled me for about 2 weeks after that. What I learned, with me (OH, ANS failing), I should not have been trying to get down tending to my flower beds or trying to ride my bike, or being active outside when it was 90 degrees or higher or high humidity, or raise my arms above my heart level without anticipation of the BP plummeting. Had I known that in the spring, perhaps I would not have become so debilitated by the time I saw the specialist in Oct. My cardiologist had all my pertinent records and tests to fax to that specialist. No one knows your body better than you. I was being a patient patient and thought I might wither away and die before ever getting to be seen by a specialist. I had to undergo a good course of physical therapy (aquaciser treadmil) to recondition things. With winter following, I had fewer episodes in the cooler weather. I'm dreading the heat of the summer again. I go back to Toledo next month. It's about a 5 hour drive or so but so worth it to me. When I left my first appointment, I was overwhelmed. On the way home and for weeks following, I thought of so many questions. Now that I'm scheduled to go back, I can't remember the questions I'd wanted to ask. Figuring out the right combo of meds is the trickiest part with me (they've tried many but only 1 in combo--one of the combo meds I couldn't tolerate, so now I'm back to one). I don't know your doctors but mine were only too happy to have expert opinion. I was only the second patient my cardiologist ever had to refer. I'm so glad he did. I was also new to my PCP (having EDS to boot) and of course the PCP defers anything cardiac wise to cardiologist. I wouldn't think your cardiologist or neurologist would be opposed to making referral. I would just say, in living through last summer, the worst of my life, don't wait too long. There are some wonderful specialists out there. Best wishes on your journey.

My ANA is always normal (whenever it's been checked). Laryngologist who scoped me this winter added dx of Sjogren's (added a Rx) which seemed feasible--said throat was really, really dry. Just had started treatment in fall for corneal abrasion/dry eyes and had dryness elsewhere. I, too, had endometriosis. I have CVID, selective IgA deficiency and fail the pneumonia vaccine challenge. I am EDS III but also have the Delta Granule Storage Pool Deficiency. I am sorry not to be familiar with publications. I just try to roll with the flow and am happy that my PCP has not dumped me (being her first Zebra in all her years of practice). My cardiac specialist in dysautonomia explained to me whereas before I had POTS, when I saw him many months later, I had orthostatic hypotension and my ANS was failing. I would have fewer warnings of faint and could anticipate down the road needing a pacemaker. My BP has been doing pretty good--until Sunday when that sunshine dared me to go out and cut off the dead stuff from my fall flowers/plants. It called for a lot of squatting and stooping (and I tried to reach above my head to get shovel out of loft). Then I started staggering around the yard to get to a chair for things to pass. What I know--I get transfused with gamma globulin, I still suffer from the sinus/respiratory/stomach stuff that IgG doesn't defend, I get platelets before procedures, I don't get procedures unless last resort, and then do not get rattled with post op complications that can come with EDS) and all the other things we are taught/learn that comes with the dysautonomia. As bad as my pains are from EDS and fibro, they are trivial compared to all this other stuff that pushes me down.

I would think that would be a good assumption. I've had blood tests that give a value but then some may follow with a few paragraphs about how the measures were performed, using certain instrumentation, etc. and some follow with another explanation of what would be normal for African Americans and what would be normal for Non-African Americans. I think values that require special spectrometry or other instrumentation explain the technique. Since techniques for certain tests could vary by which method the lab uses, there would not be a 'universal' normal range, rather it would depend on the type of test and specifically how measurements or counts were made. (if that makes sense). Sometimes the time of the day a specimen is taken (as I'm sure you know), would effect what would be considered a normal level (i.e. serum cortisol).

Glad you're feeling better. Hope you're on the road to speedy recovery.

Yea, lemonsin2lemonade. So happy for you. Good luck in your job search. With an attitude and determination like yours, you will find a path.

Well that just stinks. I have to drive nearly 2 hours and then spend another 4 to 5 to get the IV Ig at hospital (which is why I'm so anxious to get it subcutaneously). It's going to cost me more (to me) but I will be so glad to have the convenience of my home/in my time. I am supposed to infuse weekly. I hope there is someone in your benefits department who can explain things and listen to what you are saying. I find a lot of billing mistakes that I call my insurance company about. If I don't get anywhere with talking to my benefits coordinator, and/or the insurance plan, I won't pass up the right to appeal. I just feel so badly for the situation you are in. With my plan, if the doctor writes the script for ordering/dispensing this 'equipment', it is considered DME (durable medical equipment). The heparin they use in your port (?) would be considered to be a pharmaceutical. When I used to get my allergy syringes, I would have to pick them up at the pharmacy, sign for them, but they were rung up as prescription (but that was 15 years ago). I guess what I am saying, you cannot get the substance from the bottle into the port without this equipment (which would qualify as medically necessary) since you have the prescription. Perhaps it is the supplier who is not billing or coding this correctly on the bill. You might be persistent in trying to talk to someone there who does the billing. I hope you check out the websites I'd mentioned. Someone there may be more useful than my own experiences. Good luck!

How aggravating for you. I'm so sorry you have to deal with this kind of stuff, especially when you're ill. I've waged appeals to my health care insurance company in the past--most successful, but only if it a covered benefit. With my IV Ig, everything is covered under my medical insurance (I get transfused at hospital). When I switch over to home sub cutaneous Ig, the medication will be under my pharmaceutical benefit (I too will have a co-pay). The home health care will be under my medical benefit and I was thinking that tubing, pumps, needles, supplies are probably considered to be 'durable medical equipment' (under my medical benefit). Are you able to get infused at an ambulatory unit at local hospital rather than home (would it be back under the medical benefit)? My Ig has to be pre-authorized. Our pharmaceutical manager sends us a formulary but writes that things are always subject to change within the calendar year (and they have, without even forewarning us). I sure hope this doesn't happen to me. It's so scarey. I have found helpful information on idf.org, and there are other websites whose names escape me at the moment. You might google PI or CVID support groups. I know idf.org has advocates and members that you might bounce this off of. There is an entire section dedicated to insurance issues (and there are telephone contacts available). It seems to me since everybody's insurances are so varying, it does get tricky. Unfortunately, with your illness, you certainly do not need the added stress. Best wishes that you get this resolved if you can.

I found my trip to the cardiac specialist in dysautonomia to be very overwhelming and was glad I had another set of ears with me (my son accompanied me). Even though it was getting into cooler weather up where I went, when I went, I intentionally wore sandals so that he could see my purplish blue, swollen feet/legs (we had a good 7 hour ride to get there and another 4 hour wait). I was very fatigued also so not at the peak of my mental functioning. My cardiologist had faxed him all my cardiac records/testing and also spoke to him on the telephone before I visited. I use a tracker for my BPs and heart rates that I found on MedHelp.org. I keep track of my dailies and any near syncopal/syncopal episodes and plot the contrast on the graft along with notes of what I was doing at the time the episode occurred/what symptoms I had when the episode occurred. I never realized how many incidents I had in a month's time until I would go to print the graph off each month and enter my notes on the back of that page. My cardiologist liked this tool so I've just kept a habit of using it. Write your questions down before you go and take them with you. I also took paper that I could write things down (i.e. I never would have remembered 'Delta Granule Storage Pool Deficiency' lab test that was run on my own--not even til I got to the car to write it down). The specialist was right though, I did have it, (the test was positive and he sent me results with instructions). Travel safe.

Oh, definitely no foam rubber in my bedding or pillows. I wear cotton (live in midwest with frigid winters and drafty house). I use cotton socks with grippers for the floor and if I get to hot, I remove those to cool me down quicker. Since the medication makes the hands and feet even colder, it seems if they're cold, I'm cold. I wear nothing but cotton and use cotton bedding and down comforter and a down throw when I sit in the living room that I can take off or put on. That seems to insulate me pretty well. I have an electric throw for the sofa but never had to pull it out this year. I know when I'm on the sofa or in bed and that heat kicks on, my lands it feels like I'm going to smother. I feel really bad and headachey trying to get through (and I keep my thermostat turned to 67 in the day and 65 at night). When the heat kicks on when I'm sleeping, I'm still sometimes kicking the blankets off until the heat shutts off, so needless to say the quality of the sleep is not so good. DH is the one who deserves a medal. He kicks the heat up the minute he walks in the door (but then goes out to run errands--at which point I go behind him and turn it right back down) :-) I made the mistake of taking some polyester jammies to sister's home for holiday visit (older home--out in woods in Jan., sitting up on hill) thinking if I got hot I could put more blankets on. It seemed they hadn't opened up the vent and had the door to the guest room closed off and it was really cold in that room but I'd insisted it was just fine to me. Sister put extra blankets at foot of bed and showed me where more were. I was comfortable. But her DH (or she) thought they'd best turn heat up to warm that room up. So whereas the polyester worked fine before, now it was hot hot hot. Nothing that is not breathable for me anymore. Just give me a throw if I'm cold but I underdress since I can tuck the extremeties under the throw off and on. I hear ya', sister! I also dress (when I go out) in layers (per rheume's recommendation for my arthritis/fibromyalgia)--silk, cotton or capaline (sp) and then wool if needed. All breathable fabrics and layering, you can remove. Silk and wool come in different weights and feels so it's much better than the 'wool' days of yore.

That is so great. My immunologist told me that serum testing now shows I have no allergies (save the drug allergies), but I just got my CT scan of sinuses back that shows 'chronic inflammation'. I intend to ask her about mast cell at my appointment this week with this in hand (being done at same university). I don't know why else I would have inflammation. My ANA always comes back normal as do my ESR, lupus tests, etc. My otolaryngologist wrote 'Sicca' on my list of diagnoses (which I looked up--Sjogren's which is autoimmune). I just do not understand but something is happening. I hope she will endulge my questions (she's pretty good to at least let me ask my questions but has her 'methodology' of conducting exams). She's always running some kinds of tests so I know there is a method to her madness. She insists I'm just immunocompromised, but I wonder if that's how the chronic inflammation in the sinuses (without allergies) will be explained to me. I had to undergo series of desensitization 3 different times by allergists but none since the mid 90s (thankfully I'd found the old paper from that allergist showing the things I was allergic to and took it to her at my last appointment so she didn't think I was mistaken). Good health and good luck on this trek. Just adding update: Saw my immunologist Thursday in follow-up and mast cell was on her list of things she'd been intending to look at. She ordered a tryptase test (although I did not feel like I was having any episode at the time, just some skin issues, a little bathroom issue and sinus infection with the CT scan that showed chronic inflammation. I don't look for it to be high but I never would have known to ask (and I did have to ask for her to order).