rubytuesday

I have hypersonmia and on rare occassion do experience sleep paralysis and sleep hallucination (as if I am still in conscious state but unable to respond/react purposefully). I can hear my heart beating in my ears and feel its pounding. I am half in and half out.

Where I live the Life Alert charges a monthly service fee (with seniors they may base it on income but I do not think so). I purchased a medic alert landline phone. I program telephone numbers to call first (husband, mother, and then if no response, 911), It has big button you can push to send alarm (on the phone) and a necklace you can wear to push the button. I really need to start wearing that when I'm alone (but my thinking is that if I were to have bad head injury, I probably wouldn't be alert enough to press it and it would only be useful if I sustained broken bone or just wasn't getting the blood flow back fast enough to let me get up). I found it over the internet, doing a search.

I was on Midodrine and Mestinon was added a week or two later. The Mestinon gave me terrible abdominal cramping, nausea and vomiting (and I was still hypotensive on the low dose). Heart specialist discontinued the Mestinon the first week of Dec. and said would let it get out of my system before beginning another agent to try to get me hyppertensive. So I have been on 10 mg of Midodrine 3 times/day for over 1 month. My BP was running usually in low or low normal range (although I had syncope on Christmas day). On Thursday afternoon another specialist added Enoxac (sp?) 2 times/day for the dryness in throat, mouth, nose, eyes, etc. Said it would help produce or stimulate fluid production. On Saturday morning after just 3 doses I got up with a BP of 75/44. This morn it was 84/55. Now I'm thinking this new med is bringing my BP down lower. The common side effects of the new Rx are: excessive sweating, nausea/vomiting, diarrhea, heart rate too slow, too fast or irregular, fainting. (Sounds like whatever this Rx is does all the things my autonomic nervous system does when it is wacky). My nausea was really bad yesterday too but I had headache that turned to migraine and progressed with the vomiting. So am not sure if it was this new med or the migraine. The Midodrine didn't really cause symptoms with me as I have this ongoing, usually not real severe nausea--just nagging. I'll be anxious to see how I do and what will be started next (and if it will counter the effects of this new Rx).

mully, this was my experience. My cardiologist made referral in first of March 2011. He filled out/faxed paperwork but was not contacted (so he tells me) by Dr G's office to send my records until near the end of March 2011. At the time of the referral I was told his wait list is about a year out and they do not really 'triage' (probably unless you are were in UTMC hospital or ER). My cardiologist said I had POTS (my symptoms began in Jan. 2009 but I dismissed my occassional near syncope until April 2009 when I had to be hospitalized). I asked if Dr. G had a cancellation list and was told by my cardiologist and Dr G's office that he does not. So I waited patiently. My cardiologist told me that he'd referred a patient to Dr. G in Feb. who got in to see him in June, so he was hoping I'd be in before my follow-up appointment with my cardiologist in Sept. Summer came and went and I grew to be so debilitated that by Sept's end, when I saw my cardiologist (taking with me my graph of BPs/HRs from MedHelp), he was so concerned that he called Dr. G's office himself. (At first my cardiologist told me he didn't want Dr G's PA to see me but Dr G himself--not diminishing the expertise of his PA, but by Sept's end, he must have asked for either to see me and the reason I say this is because Dr. G's office called me within a couple of days making an appt with Dr G on Oct 3rd 2011. When I saw my cardiologist in follow-up about a week later, he asked me who I saw at UTMC, expecting that it was probably the PA since they got me in so quickly and he just wanted me to at least get a foot in the door. I told him that it was Dr G who saw me.). I had a long ride to get there for my 1 p.m. appt. and was greeted by a receptionist who told me when we arrived early that Dr G was running late (but gave no estimate on time frame--only that we had time to go lunch). Around 3 p.m. DS asked about what time and we were told he had just seen his 10 a.m. patient at noon so it should not be much longer. I got in to his exam room around 3:30. He was very thorough and very kind, a good listener, patient with my questions. He diagnosed me quickly and provided me with some reassurance that this had been the worst summer for all of his patients due to the high temps (90 and over) and humidity (I didn't know anything about this cause/effect on diagnosis itself as it was all new to me). By this time, I moved from POTS (which I still occasionally have) to OH with the HR typically running slower. He told me that it would be likely I would need a pacer in future. He did not make me feel rushed except that he needed to run a lab test and lab closed at 5:30. He escorted me personally. He Rx'd additional medication and explained his goal. I asked him if I had problems with the faints or BP if I should call him or my cardiologist. He told me he would be happy to help but that he was certain my cardiologist had fewer patients than he. My cardiologist preferred Dr G to get my BP to his target range but if I could not get in communication with Dr G, told me to call him(my cardiologist). When I left his office on the very long ride home, I was overwhelmed with everything we went over and realized I had a lot more questions but none urgent enough to disrupt his practice. I did ask before leaving about any follow-up and his nurse just looked at me and said they would send me a 'blue card' when it was time for me to make a follow-up appointment. Dr G told me to call his office in 3 weeks for my lab results. When I called, I had to leave message on nurse line. She called me back days later asking which lab I had test done at and when because there was no record in my file. Then I got letter in the mail (form letter, thanking me for chosing him to be part of my health care team, and that if I needed any disability forms completed to have my PCP fill them out??? That was not applicable to me). In the meantime I was still having syncope and vomiting from the new med and other Rx increase. It took them nearly a month to get back with me (nurse for PA) telling me to stop the one med as it was doing more harm than good (I had dropped from 102 to 94 lbs. (not to mention the erosion to my esophagus/throat and larynx). She told me they would let the med get out of my system before initiating another agent. That was first week in Dec and I've not had any word from them re: starting any other med. (I am having fewer faints but now it is much cooler weather and am not dealing with high heat/humidity--but still deal with issues when standing very long--especially wearing heavy winter coat. And I did have syncopal event in prepping Christmas dinner. My cardiologist should have faxed my records to Dr G at the time they completed and faxed his referral form (IMO). I didn't really blame anyone as good specialists (he is also knowledgable about EDS which I have) are hard to come by but honestly I thought I might wither away and die before being seen. I appreciate very much his willingness to take me as a patient with the complex medical history I have. I have no regrets at all and am hopeful that he can help me get to where I can have fewer incidents. He also Rx'd aquaciser treadmil (or wrote Rx to get me into water program but we don't have any here with temps conducive to my fibro/arthritis--yet not too hot) to condition my legs and build endurance. When I saw my cardiologist in follow-up after Dr Gs visit (about a week or two later, he had had no consult note from him as yet). When I did call Dr. G about the faints still and the vomiting, his nurse seemed 'curt' and said 'well some people we just can't get their BPs up' (quite the contrary to what Dr G told me--that 'we have lots of things we may have to try and use to get you hypertensive). I wish you all the best. I was as patient as I felt I could be given all circumstances and believe that it took a serious phone call from my cardiologist nearly 6 months after my initial referral to get me in so soon. In fact, when I answered the phone, I thought it was a dentist's office returning my call and when the lady told me her name--I proceded into the reason for my call to dentist when I froze in time and uttered 'did you say you were calling from Dr Gs at UTMC?. I apologized profusely and we both got a big chuckle but I figured they'd write a big 'L' for looney on my chart.

I am sending virtual hug. My otolaryngologist at Cancer center today started me on Rx for the chronic laryngitis (very red/inflammed larynx/vocal cords) and membranes very dry (nose bleed earlier in morning/use humidifier, have the recent Rx for dry eyes and dry mouth, lips that look/literally peel off to edges of face constantly). The Rx he said was used to treat Sjorgrens (altho he was not diagnosing me with that, he said it increases moisture if you will in those/other places). I have very shiney hands/fingers/nails/toes that someone raised could possibly be Sjorgen's. I never even mentioned the problem with my lips since every doc/dentist I've asked, aside from suggesting chap stick says it's probably an autoimmune thing. Scarey thing is that the med lists most common side effects as: nausea, diarrhea, fainting, rapid/slow/irregular heart rhythm (which will just throw another monkey into the wrench with my dysautonomia, orthostatic hypotenstion, POTS, IBD/S, persistent nausea and GERD/gastritis.

Just giving an update as to where things stand (was diagnosed with IgA and IgG deficiencies as in my post and sick with laryngitis since Christmas eve). I saw my third doctor from the cancer center today, Jan. 5th--this one an otolaryngologist referred to me by immunologist/allergist/pulmonologist at cancer center Dec. 19th for Vocal Cord Disorder. I was to have a swallowing eval along with my other nasolaryngoscope but specialist did not feel it necessary. To sum: chronic laryngitis most likely secondary to immunodeficiencies. Also vocal cord disfunction that I am to take 2 speach therapy sessions to learn breathing techniques at home--seems things close up as I try to exhale, explaining why I feel I cannot get in good air (I didn't understand the explanation). I am also to start Cevimeline which is used to treat Sjorgrens (not that he is diagnosing me with that) but said that things are very red/inflammed/dry and the dryness is most likely causing the swallowing problems. He said there were a few Rx's I was taking that could be making things drier (recently had to add Rx for dry eyes). And have to see him back in 2 months to check progress. I was still only 90.3 lbs. He told me the immunologist/allergist had planned other testing for me at next visit. She had mentioned some skin testing and latex patch but I am not certain. My Infectious Disease doc got me approved for gammagard (but I read that it is contraindicated in IgA deficiencies?). I have tried calling my immunologist to see what agent she was planning to use (she had stated it would be 5 IV transfusions consecutively--like over 5 days, then if tolerated, setting up with home transfusion with home health care assistance. (My Infectious Disease doctor shared with me that it costs less getting IV IG in infusion center than with home care). I called ID's Infusion Center he uses to ask about gammagard and IgA deficiency and she is to ask my ID and pharmacist. That infusion center gives 15 (units?) weight based over about 2 hours pre-treating with benadryl and tylenol. The nurse there speculated that perhaps the immunologist at university wanted 5 consecutive day boost in order to begin with smaller dose, leading up the the 15 (if she is also planning gammagard). Will be interesting to find out so I can make decision. If both are giving gammagard--would you go closer to home and get it IV once/month under constant supervision of nurse or would you do university recommended 5 day consecutive dosing under nursing supervision/immediate access to ordering specialist, and then to comfort of your home with less supervision, but guidance of home health care nurse? The first is about an hours drive (longer if snowy/icey). The university is nearly 2 hour drive (longer if snowy/icey). I would appreciate any suggestions. The closer infusion center told me that even if they have the name of the agent the university immunologist is planning to use, it would still only give it once/month ('we've never given it consecutive days, ever'). A little voice inside me tells me maybe I should stick to immunologist at University's plans. What would you do?

I've taken Fish Oil for at least a decade. All of my IM, rheumes, immunologists + cardiologists approve. I have IgA and IgG deficiencies but I've had these since before the fish oil was started and am in the process of getting IV Ig transfusions. I read that it is estimated that 1 in 700 of European decent have IgA deficiency--some have no symptoms while others suffer a lot of sinusitis, bronchitis, pneumonia, ear infections, upper respiratory infections, skin infections, conjunctivitis and need antibiotics when they get sick (often a double dose or a change of antibiotic after the first round). I take the fish oil for heart/vascular health. It has done nothing as far as my high cholesterol but is supposed to help keep the plaque building in the arteries. But this also requires diet and exercise.

Thank you so much for explaining this to me, Sara. You made it much easier to understand.

So I've received batch of lab testing done at the Cancer Center by allergist/pulmonologist/immunologist specialist. In the date for my immunophenotyping, the pathologist documents that 'with a CD4-CD8 ratio of 3.6 and 11% are NK cells (positive for CD56 and/or CD16 and negative for CD3)'. Does this sound like I am going to be needing bone marrow bx/asp and/or some scans to you, or am I over-reading this? Thanks for any input.

So here we go again. The specialist's office just called me to tell me that they have sent all the necessary information to the infusion center after my call yesterday and that it is the responsibility of the infusion center to secure the authorization. So I am to sit and wait for word back from the infusion center to see if/when it goes through to schedule appointments. Got to love the process.

Thank you arizona girl, I have Med Mutual and its nurse told me she could tell the specialists office if/how precert could be done if they gave her the med/reason (codes). I am glad I didn't go ahead and schedule my appointment when the infusion center called (since she said she didn't know anything about preauthorization--that all that would have been done by specialist's office). They didn't call me back yesterday but I did leave a meassage again this morning. My going to infusion center doesn't require pre-cert with my plan but home care does. And I sure would have hated to get a surprise huge bill for the IVIG after the fact due to an oversight.

I am in process of being set up for IV Ig infusions. Mine is for immunodeficiency with other autoimmune tests still out. I have terrible problem with sores on mouth/lips. I asked my pharmacist and he got a Rx from my PCP for Denavir topical application to help speed healing. Sending good wishes your way.

My Infectious Disease doctor, my hemeoncologist and my allergist/immunologist/pulmonologist all tell me that I need IV Ig as I don't make enough antibodies. The Infectious Disease doc had mentioned something about insurance authorition for the treatements at in-network infusion center. The Cancer Center's immunologist was 'arranging' my treatments at its (in-network) Infusion Center who called me today to set start date. I asked the nurse if it had been authorized by my insurance. She told me she didn't know anything about pre-authorization and would have to refer it back to that specialist's office. I tried calling my retirement system but as it was a question about medication authorization, it's automated line puts me to Express Scripts (who had told me unless they had diagnostic/billing 'codes' and the name of the gammaglobulin, they could not tell me if it required preauthorization or not. I called my medical insurance carrier and the nurse told me at first that if the ambulatory infusion center was in net-work it is covered, but I told her I realized that, but I did not want to get an EOB that shows the infusion center services were covered but then get a big denial on the gamma globulin itselt if it needed pre-authorized. She too said that the specialist's office could call the phone number on my medical card and give them the code and she could tell them if covered or not. She told me Infusion Centers don't require pre-authorization, but then when it will come to home infusions, with Home Health Care, that needs to be pre-authorized. So I am confused. The nurse was lunching when I called specialist's office but never returned my call. Do those of you who receive gamma globulin at Infusion Centers require some sort of pre-certification for the treatment?

Good question, but with a lot of the associated GI disturbances many are advised to elevate the head of the bed. With the medication I'm on to try to get me hypertensive, it warns against taking it and napping and I'm narcoleptic. Says it can make your BP too high/stroke in your sleep. I would think a lot of people nap lying down or back in recliner. I lay on pillow at night (but don't take my Midodrine after 5 p.m.). My BP is still running low but they're still working on things (increasing it to 10 mg 3 X day from 5mg--and am currently at 25 mg but still fainted this morning on kitchen floor making Christmas dinner. I also am supposed to keep my legs elevated as much as I can due to blood/fluid pooling/retention but being a side/stomach sleeper, I can't elevate the legs in bed at night. I would not think a small pillow would hurt at all.

Thank you for posting, jangle. I wondered, too if this was contributing to the worsening memory, ceasing in mid sentence in conversation and such all the time. My doctors assure me that it's not (but I also have Chiari I 7 mm and have not been able to get neuro to see the value in obtaining a seated/lying MRI). My cardiac specialist in dysautonomia was most concerned about the ailment being 4th leading cause of death in people like us/elderly--the injuries from the falls.

I'm sorry about your ordeal--DH went through same--took his over 2 years with lawyer and supportive docs. As far as Dr G, I am not so certain that you can count on him to do any paperwork on your behalf as after my first visit, about a month or so later, I received a 'thank you for chosing' letter that reminded me that Dr G in now an integral part of my health care team but considering the volume of his patients/responsiblilities, that anyone needing disability forms or the like completed to go through their personnal physicians (I never had gone to him to pursue disability--am already disabled, but I suppose by the letter he must get asked a lot). Good luck and hope you enjoy your holidays. I spent part of preparing Christmas dinner with a faint on the kitchen floor. Thankfully--no food got hurt :-)

Thank you, again, arizona girl. I know my ID and the specialist Monday mentioned that authorization from ins. would be no brainer for infusions (which will give me time to explore infusion companies in my network). Actually I had CT Scan at local (rural) hospital yesterday. They had to draw creat and put in saline lock for contrast. I told them I had Latex allergy and allergy to even paper tape but they had no other 'products'. He told me he'd try to do things as quickly as possible so that skin would not be exposed too long, and he minimized the tape as much as he could. Then I added that I'm a bleeder and he didn't have anything but cotton for me to hold/bend my arm while doing the remainder of the scan. I found on 30 day event monitor the monitor company who sent supplies (that was in-network that heart doctor arranged) did not carry any non-allergenic monitoring pads (got 2nd + 3rd deg burns with the itchy rash from that that discolored my skin and cropped up for months--even alternating with the few 'non-allergenic' ones the big city hospital slipped me when I had my TTT. Needless to say I end up with big long lasting skin issues that drive me insane. I will let you know when I'm set up (will try to post how it goes if am up to it). I sure hate the thought of aggravating migraine (and possibly tossing the cookies). Thank you for keeping me in the prayers through this.

When I was researching this new diagnosis of Vocal Cord Dysfunction (symptoms and triggers mimic asthma), I learned that one trigger is GERD (which I have and PPI is no help), but one could also be triggered by larygeal regurg. I'd have him checked by ENT/Otolaryngologist.

Arizona girl, Thank you so much for the information. I have so many similar stomach issues as you (down to 89.4 lbs) with the constant nagging nausea. The Mestinon put it over the top and they did have to take me off of that but am increasing the Midodrine. I had to have a month-long infusion at home of DHE for status migranus going into third month. Not having a lot of 'fatty' tissue, wherever that subcutaneous needle was inserted, I got terrible cellulitis (and having tape/latex allergy that only made things worse with the skin). It's been almost 7 years ago, so I would have to have home health come in (you have to be homebound here to qualify and I pretty much am). The infusion companies will not deliver supplies without a home health care agency involved. The specialist that I saw Monday did tell me that I would have to be watched very closely during IV transfusions until such time that I could go on home infusion. I'd just remembered from days yore when people had to be admitted to hospital to receive those infusions and how painful they said they were--requiring narcotic IV administration. Felt so bad for them and felt so blessed not to be in there shoes--never thought I'd be in this place. I guess that goes to show, one never knows. I still feel blessed as things could be so much worse. I'm glad it is working well with you now and glad to know I will learn the feeling when the body needs more. Thank you for the support and I will check out Daily strenght, too.

I have EDS III, too, and have been hemorrhager (Delta Granule Storage Pool Deficiency) life long. Before science came up with recent way to test for this particular bleed, the hemeoncologist just clumped me into VonWillebrand's. The treatment for both so far are the same. My cardiac specialist in dysautonomia is the one who picked right up on it (ordered the test there at the University's lab and said it was one of it's lab staff that designed the test). I have to see hemeoncologist now (have been on soonest available list since Nov--fitting me in near end of Jan.) to give official treatment plan for the hemorrhages. Cardiac specialist thought EDS plays a role in my blood/fluids pooling in my legs (lax muscles and venous structures)--that dictate when I have to take Bumetadine to get removed. POTS is not rare in EDS. In fact when I told DS who was stationed in Iraq this spring about my dx of POTS, she (being in medical field) sent me a link to www.inspire.com. There is an Ehlers-Danlos support group (and it has break down by category of interest or general). The link she sent me was a blog about EDS/POTS. Hope that helps. Lots of good information/good members there.

Allergies, sinus problems, gravity if side/stomach sleeper, rubbing tender skin not delicatly enough when washing and even genetics can also cause the dark circles. I've had them life-long and even asked on multiple occasions (seriously) who hit me. Seems to run on DFs side and being very fair skined does not help. The skin around eyes and mouth is thinnest on the face and thus the vasculature is more visible. (I'd tried Vitamin K and other proclaimed natural remedies but nothing worked shy of just camoflauging them. Looking back since you mentioned it, they do always seem to appear much darker when I'm feeling bad. Don't have bags--just dark circles.

Ernie, I have a wheeled walker with a seat I can put down too if I feel brave enough to venture out to a place that may require prolonged standing or walking. I haven't used it yet--but I do have it as one never knows. If DH is out of town on business and I need to go someplace but BP starting out as low, or not so good day, I've got it.

I had been feeling (for a few years now) that I just wasn't getting in good air (for lack of better way to describe it. I have intrinsic and extrinsic asthma and COPD. It isn't like my asthma events so I thought perhaps due to COPD? I was at immunologist/pulmonologist/allergist at Cancer Center Mon. and we were discussing my sinus surgeries/repeated infections and she did pulmonary loop function test that showed I have Vocal Cord Dysfunction. It's usually missed by docs and ER docs since it mimics and triggers may be same as asthma in so many ways (I can tell difference and I've been living with this since late spring 2007). There is a nerve under the vocal cords that is regulated by the autonomic nervous system--hum? And things like my frequent dry cough or post nasal drip or GERD can also cause irritation. EDS can play a role (making ligaments/muscles more lax) which I have. I'd noticed hoarseness off and on and the lack of the ability to control the force/projection of my voice when I speak, lector at church or sing. I thought that might have been due to multiple sinus surgeries. Now I am being sent to otolaryngologist who is one in handful in US who does phonetic surgery (not that I need that). I believe the standard is some speech therapy to teach diaphragmatic breathing and muscle relaxation. I also learned that the larynx is the most sensative part of the entire respiratory system and when anything irritates it, it sets it into spasms. These spasms cause your airway to close as you try to breathe in (in some cases) or breathe out (in other cases). The specialist at University Cancer Center told me that typical 'Pulmonary Function Studies' do not include this loop study that catches this. I believe mine to be chronic at this point as some of these factors are not controllable by meds/modes/diet tried with me for the drip and gerd. And I didn't have respiratory infection, nor 'cold air' in doctor's office (like outdoor cold air that is an irritant). I had filled out neurology questionnaire and called it to neuro's attention the fact that I sometimes have difficulty swallowing and feel like I am going to choke at night in bed. I'd mentioned it to PCP (IM) too but nothing was ever explored--just dismissed. Just planting food for thought as you watch and learn your body with this.

This has been interesting reading. I also have hypogammaglobulin and multicomplex immune deficiencies (with my POTS/OH/ANS failing). I am to start IV Ig and have been really nervous about headaches since it doesn't take much to push my bad headache into maigraine and fast. The Infectious Disease doctor's office has an infusion center where I presume it will be given. Do you think I should have a driver (he's a good hour's drive from where I live)? Will they treat your symptoms or pretreat you before giving (I have multiple drug allergies)? I just hate to have to ask someone to come and sit/wait on me for those treatments in the clinic. Thank you for posting. I hope this makes you feel good enough to be able to at least enjoy the holidays. Best wishes being sent your way

I am an EDSer. My DS was diagnosed (inadvertently) with probably congenital dilated aorta at age 34. My echos show MR, TR, and a little stenosis/pericardial effusion. I'd just asked my cardiologist if the echo was sufficient given my EDS and DS's history. I thought it would be but he ordered CT scan of aorta from chest to pelvis. (DS's was picked up by MRI). So I suppose what I am saying is that it is not exclusive to POTS but there can be other underlying causes.