rubytuesday

Hope you feel better, Rich. I'd get myself to ER if I felt as bad as you. I've been nursing another sinus infection here. Hit me last Fri. and this past Fri. it felt like it was starting brand new again (today if day 10 of the infection, day 4 of more antibiotics and I'm still feeling really really lowsy). My ENT always swears things look so angry and inflamed when I get this way and had me checked for Addisons. I didn't have it--just immune deficiencies (have to take gamma globulin. Also with my selective IgA deficiency, I am left even more vulnerable to bugs that cause sinus infections, respiratory infections, stomach and brain infections.). I cannot take tylenol more than 2 consecutive days as in me it causes a rebound headache like a migraine. I can't take the cold meds (can't take aspirin/ibuprofen products due to allergies) as with my Midodrine, the cold remedies make my BP too high. I've been pushing the fluids, using waterless vaporizer, Vicks, moist heating pad but my heart rate and BP and temp aren't all over the highs and lows like your's . My normal temp is 97.6 so when I get to 99 I am really sick. Take care. Get some help if you can. If you don't feel that you need an ambulance but need medical care, does your community have a taxi service? Feel better.

Thanks for posting the article. I hate, hate, hate when it happens. I do also feel more lightheaded (just a bit) when lying on my back. I've had the sleep paralysis very randomly for decades. I also sleep walk/talk. I had 2 sleep studies showing hypersomnia and excessive daytime sleepiness, narcolepsy. Reading the article I had to laugh. My DH set his alarm to get up for early travel this morn. I had been awake (laying with eyes closed) and heard his alarm go off at 5. After what seemed a while (him still sleeping), I thought I had gently shook his shoulder and said the alarm went off but then since no voice came out, I thought I must have been dreaming. DH rolled over in bed and asked 'what?'. I told him that I hadn't said anything. He said, 'no, you poked me in the shoulder'. (Then he proceded to remind me how I do a lot of things when I'm asleep--which makes it so hard for him to tell if I am really awake or asleep). But the sweating (which thankfully seldom happens) is down right embarrassing and uncomfortable. I sleep on my side/stomach mostly and have also had to literally pick up my arm using the other whenever it goes numb to turn over and get it out of harm's way (LOL).

I've always run low BP but didn't start with neurocardiogenic syncope til Jan. 2009, progressing to POTS by Mar. 2011 and dx OH with ANS failing in Oct. 2011. I had been on trial of Klonopin 15 years or more ago for migraine prevention and fibro treatment but I couldn't tolerate the side effects. Years later, one of the med combinations the neurologist tried (for same thing) included Effexor XR. I could not tolerate that combo either--I came home from work one eve. feeling like I'd had a stroke--very heavy all over, fell across bed, unable to get up and mouth was twitching (never twitched before in my life). After I was finally able to move (mouth still twitching) I called my neuro even tho it was 'after hours'. She assured me mouth twitching was normal. It gradually subsided before I went to sleep that night but when pulling into work the next morning my mouth and head, hands, arms started the unintentional jerking (I had to go up several floors to get to my office to get to phone to call neuro). I had to be escorted to her office and was diagnosed with some sort of 'chemical' reaction in brain--I was so hypertensive (in stroke range) and it was from these meds. They took me off of them immediately but put me on periactin for several days, which made me sleep all the time and gave me violent nightmares. Needless to say, since over all those years and nothing working to stop my migraines, I just gave up with those things. You are one tough cookie. My hat is off to you--and raising young ones. Our son was thankfully grown and it was just me and the DH by this time. Working full time, managing a home and exercises and some socialization/volunteer work was as much as I could muster. No way I could trust myself to be responsible tending to little ones or to driving on that kind of stuff. I take Midodrine for the OH. If this summer proves as debilitating as last, cardiologist will no doubt have to add something else (failed Florinef--some of those made me too hypertensive). I have to restrict my sodium now whereas before I was to eat and drink salt. I pool blood and fluids and my heart rate fails to get really tachy like it had with my POTS which is why I suppose the cardiac specialist in dysautonomia told me my autonomic nervous system was failing and in distant future I may need pacemaker. I wish you much health and energy.

I have a lot of drug allergies/sensitivities. My immunologist/allergist told me to use a nickel free multi-viatamin. One-a-Day was the only brand I could find that was nickel free where I live in the rural area. I found it at a big retail grocery chain store. It came in generic form that was cheaper and in many varieties, too.

My immunologist Rx'd Isosource (more potent than Ensure/Boost products) that my local pharmacist gets a discount on and special orders for me. I also started adding whey to something in my food/drink once daily for a little extra protein. Again the Isosource was under the recommendation of my immunologist (and my PCP concurred).

I'm kind of reversal from you. I was diagnosed with my EDS in 2005 and would have foreseen continued working in the 60+ hour workweek that I so enjoyed (had I not been seriously injured when hit by a car, which despite my greatest efforts took me away from that). I commited to the exercise regime of my specialists and felt good. I could live with my aches, pains and being patched up, injected and courses of physical therapy/occupational therapy as needed. Any complications from surgeries were simply dealt with as complications (had surgeries and therapies long before ever being diagnosed with EDS, so to me we continue to treat as before--very conservative orthopedically, and surgery only when absolutely necessary). It was not until 2011 that I was diagnosed with my POTS altho I battled with near syncope for 2 1/2 years til then with various trials of meds and lots of testing/referrals. I found my POTS last summer to be the most debilitating thing that ever happened to me. Once I got started on something that seems to be helping for the most part, I am doing much better than last summer (I don't know if it is because of cooler winter weather but I'm making the most of things while it lasts). Before EDS came diagnoses of osteoarthritis and fibromyalgia. I already had an orthopede, a rheumatologist and neurologist on board and now cardiac/cardiac specialist in dysautonomia so simply receiving the diagnosis was not so shocking to me--it just explains a lot (looking back 5 decades). The physicians treat my symptoms. I arm myself by learning as much as I can and help to educate my physicians who have heard of but never had an EDS pt. that he/she was aware of. My own PCP says she's now certain there are more--just not having been diagnosed. All of my orthopedes, physiatrists, rheumatologists have encouraged exercise with me but caution me to avoid point of inflammation (especially since I cannot take aspirin, ibuprofen or NSAIDS). As for the muscles and joints, I was told the old saying--use it or lose it. Glad you're doing well with your dysautonomia :-)

Jen, I have selective IgA deficiency among my multicomplex immune deficiencies and take IV Ig. Everyone's response is different. My dose is given at 'the rate they would give it to a 100 year old person' according to my infusion nurse. That being said, if I cannot get a physician who listens to me, and explains his treatment plan in terms that I understand (he doesn't have to agree with me, he is the physician who is trained, educated and experienced), I don't keep that physician. Trust is a huge component in the physician-patient relationship. That is why, when I know and respect a physician but feels he has dragged his heels too long for whatever reason, I pull in some 'manpower' with me and suddenly, an action plan gets in place rather expedicously.

Me, too. I force myself to eat but once in a while I will have a strong appetitie but if I don't sieze it quickly, it will pass. My fish oil makes me nauseous. My immunologist thought my calcium/vitamin D were also contributing to the problem and switched me to a nickel free multiple 1 a day vitamin. I also have a fatty pancreas and malabsorption issues, GERD, gastritis, IBD, so per recommendation of the immunologist, I take (choke down) a can of Rx Isosource every day to help get in vitamins/minerals/calories, plus have added whey for more protein to one of my foods each day.

I would take a strong advocate with me (should you decide to go), someone who is strong spoken. I hate to say this but I get more 'action' when I drag DH into appointment room (am taken more seriously) by male physicians (even tho I am health care professional--I don't tell them but some know). I don't tell them what to do but ask something like 'would there be any value in. . .' or 'could you please explain to me why . . .would not make any sense with . . .'. (I play 'stupid' to make it seem as if it is his/her brilliant idea). I apologize if I am misrepresenting the strong men and women who are able to get physicians to listen but I'm just speaking from my own personnal experience when I run into this.

This happens to me before I come to a full awakening to get out of bed. Usually my lightheadedness is when I'm standing so this lying in bed stretching seems new to me. I have also rare occassion that I will wake from deep sleep with my bed totally drenched from profuse sweating (like I do when I have near syncope). Could this signify the blood pressure having dropped too low in my sleep? My BP is usually at its lowest first thing in the morning and again at bedtime. Is this typical for us?

I had asthma since childhood. I have had several pulmonary (with loop) function studies ordered by both my PCP (done at local hospital), ABGs (done in ER), CT lung scan (for nodule on CXR that was scarring from pneumonia) at hospital outpatient radiology (ordered by pulmonologist). CXR also shows COPD and since 2007, pulmonary function studies (with loop) show Vocal Cord Dysfunction (upper airway obstruction) as well (immunologist/pulm./allergist found this). I use rescue inhaler (PCP IM/allergist first to Rx). If I get bouts with bronchitis, they add Pulmacort. I take Singulair (PCP IM) at bedtime. When the vocal cord dysfunction is triggered, I have to use voice rest and breathing exercises and rescue breathing taught by specialized speech therapist (under supervision/orders or university otolaryngologist who scoped me to confirm after pulmonary function test by immunologist at same university showed the VCD). I have also had two sleep studies (day and night) looking for sleep apnea or restless legs. I did have some complex sleep apneas with puOx drop to 84% but not enough to warrent C Pap. One of those studies was ordered by my rheumatologist and the second was ordered by my neurologist (both were performed in independent sleep laboratories).

I had vertigo once and it was a totally diffenent sensation with me than the POTS. I usually get that way when near syncopal standing, but when I got too warm in church (sitting), a started to feel it come on so now I carry water and a fan to church with me to try to get through it. (Not hot flashes--had those before, too). The past week, I'd told the hubby that I'm finding when I change positions/stretch in bed, I start to feel that lightheadedness. Am not sure if it's the BP going lower or if my Chiari I is causing compression. There were some exercises (and Rx) that ENT gave me to help overcome the vertigo. (Think mine was labrynthritis.

Thanks for sharing, lemons. I envy you to be able to do that gardening. When we moved to this house there wasn't any landscaping. I'd landscaped and made 7 flower beds (3 very small). My problem is I'm always finding myself in pretty weather going to do light weeking. When I do that, I either squat or bend down. So I just get up and either get up and have to get down before faint. My cardiac specialist in dysautonomia tells me that I will have fewer warnings of faint and about falls being 4th leading cause of death with this. I sure don't want to be hitting my head on the rocks or bricks. He also told me not to be doing things outside when it's 90 or above/high humidity. I never considered light weeding anything 'athletic' but I suppose it is the heat/humidity coupled with the bends/squats that I haven't been able to overcome yet. I can walk, but where I live in either direction I would go, I still have a faily steep incline to walk and the driveway also has a good incline. I can go down steps, or steps that are small, but a steep step of multiple steep stairs are hard for me. By the time I get to the top landing at church, I must show it too (color goes out of my face as the blood is in my legs that feel laike they're not going to hold me up). I can cross a big parking lot and sometimes get through a store, but I can also get hit from left field with the near syncope, when I'd felt fine just before. I'm pretty determined, though. If it means wearing a helmet to pull the weeds this year--by golly, I've bought one :-) Sounds like you got great information. How did they test for Sjogrens? I'm on pilocarpine and was just curious.

Having fibromyalgia and osteoarthritis, my orthopedes, physiatrists and rheumatologists have told me that no exercise was not an option. My dilemna was when I could no longer be safe on my bike that I rode 10 miles every day, or on my treadmil. When I might lean forward on my bike to go uphill, I suppose it was like bending over which is restricted with my orthostatic hypotension. So I bought a new stationary bike but my cardiac specialist in dysautonomia told me that with fewer warnings of faint that I should do recumbent stationary bike only. I can feel perfectly fine and be in a store and get very near syncopal really fast. I do make the bike a part of my daily regimen though. If there is a problem with weak muscles and vessels in my legs, I at least try to keep them functional. I haven't been able to add resistance due to pulmonary issues, but I ride watching the morning news 25 min./day. I've been very blessed to have good doctors who encourage exercise.

I have Vocal Cord Dysfunction and have a terrible time trying to get my fish oil down. My eye doctor says I must stay on fish oil for high omega 3 content. I aspirated the big gel tab one day and nearly choked to death (hubby was in shower). And the fish oil made me soooo nauseous, belching the oil for hours. Someone here was kind enough to recommend Fisol (enteric coated/smaller). I did get 2 bottles of that and was so happy to see the smaller ones but they are still wide at the largest point in diameter and I've found it blocking my windpipe as I'd tried to get it down a few times--today another scarey event (but my VCD is acting up). Does anybody know of any other kind of fish oil that might be smaller and softer? I found the bigger fish oil gelcap to be softer than the fisol but the fisol was smaller. Thank you for any suggestions. (I take my fish oil with bit of soft bread to help push it down).

I am sorry you're going thru this. When I got down to 86 lbs my immunologist told me my insurance co. called it failure to thrive. I do my own ADLs, housekeeping, attend mass and volunteer at my church, go out to eat and light shopping, drive to appointments not too far away, eat my meals and a Rx strength nutritional sustanance. I have GERD/gastritis and bathroom days from my IBS (definitely not of my own choosing). My appetite is good and hubby told doctor that I eat what he eats (and more through the day--only difference is he snacks at night). My pancreas is fatty so immunologist thinks it is causing malabsorption. The POTS this summer really got me down. But when I saw the immunologist for the first time in Dec., (also pulmonology/allergy), she ran a pulmonary function study with loop and it showed vocal cord dysfunction. My PCP (IM) thinks it's probably related to my Ehlers-Danlos (connective tissue). But with this VCD, I choke sometimes. My vocal cords (ligaments) shut and shut tight when they should be open. My immunologist sent me to an otolaryngologist who scoped me and explained things to me. GERD is definitely a trigger. Laughing, singing, talking loudly, smoke, scents, fatigue and many other factors can trigger these vocal cords to go into spasms that I can't really feel as spasms, only as sense of choking/grittiness/tightness about the upper airway/throat (it is also referred to as 'upper airway obstruction'). My prilosec and ranitadine don't control my GERD and Reglan can only be used short term. I asked my pulmonologist's nurse if I get into breathing crisis from the VCD/upper airway obstruction would he manage me and she said, 'no, he doesn't treat that'. I was as dumbstruck as you, knowing that sometimes this leads one to have to get an emergency tracheostomy and be on ventilator. I live here in the boonies so I'm stuck with the pulmonologist who'd misinterpretted my pulmonary function tests in 2007 (I took those results to my immunologist). His treatment for my asthma only made things worse and when I would try to tell him I couldn't swallow--his inhalers were too drying, making things worse, he would only add more (I discharged him) but he's the only one here. I do keep glass of water by bedside (ice that I let melt or get up to eat a frozen ice stick to soothe my throat). Sugar and milk makes secretions thicker if you have trouble with thin secretions and if you have trouble with thicker secretions, then avoid those (and caffiene/including chocolate). Something warm and semi solid like oatmeal or soft green beans, asparagus are more soothing on my throat. When I'm having trouble swallowing, I have to make sure to take smaller bites and really, really chew it up good. Best wishes.

I dropped from 106 to 84.6 lbs from last March to this January. I thought I was going to wither away last summer (before they got things figured out and am still working on the motility issues, gastritis and GERD). I am a little over 90 lbs now. Nothing wrong with my appetite (the nausea waxes and wanes and for me is worse in the morning). I take a prescription supplement called Isosource, packed with calories and nutrients/good fats.

Your PCP can go ahead and get an IVP now. It will show if you are retaining urine (and if you are, should get a urine specimen for culture to see if you need an antibiotic). Medication did it to me once (thing was, I started the medication and couldn't void at all--so I called my doctor). The same risks for bladder infection would apply if your bladder is not emptying completely. I retain fluid like cray (one reason I try to keep the legs up as much as I can). I was curious to see if doing my recumbent bike might help with moving moving the fluid in my legs, but if it has, it's not been much.

Good for you. I went through similar (not 72 hour drive) process when told my sub q gamma globulin was not approved by my insurance. I have been receiving IV gamma globulin and goal was to change me to sub q (much cheaper and more convient to be able to do in my home at my liesure than having to make 2 hour drive and spend 4 hours of being transfused at the center). I called my retirement company as the prescription agency who administers our retirement's plan pointed the finger to retirement system's criteria. I demanded copy of it's criteria to wage my appeal (knowing all the while my immunologist was accustomed and would get it authorized since 3 immunologists told me it was 'no brainer'). I told them it was my right. They couldn't answer other than there was no criteria--it was up to pharmacy co. to which I demanded to speak to supervisor. Super gave me same story to which I read the letter pointing out the 2 places where it cites retirement system's criteria (adding they have medical director/board who reviews/approves contract with pharmaceutical). Super tells me pharmacy has criteria and must give it to me. I ask--what happens when I call and they regurgitate this letter to me? They told me to tell them retirement system tells me it must as it pays them to administer plan. I call pharmacy. Get same story. Demand supervisor. He tells me (assures me) he must give it to his 'accountant' and would see to it that I got the criteria. He said he was off the next day but would call me on Monday (or his covering peer would call me the next day if accounting had info before his return). Never did get a call back from them (weeks ago) but did get letter that lo and behold, everything was authorized now--when nothing had changed with my condition. I was also prepared to demand that it have my case reviewed by a board certified practicing immunologist expert in both clinical and research (as is my ordering immunologist). I would have been more than fuming. I complain to my retirement system and pharmacy administrator that it appears by practice and limits that it is survival of financially fittest--as a means of disposing of those who are chronically ill or who lack the resources or knowledge of how to appeal (leaving us to lay down and die). I truly feel sorry for those who get taken advantage of and have no idea whatsoever that they can really do something to change a 'determination'.

I have orthostatic hypotension (have always run low BP way before starting fish oil). I take it and cardiologist and cardiac specialist in dysautonomia have no problems with this at all (in me). I just recently had to change to Fisol (one that is enteric coated) as I've found that to be the culprit that really sets my nausea on edge. One of the posters here recommended it to me.

I've had it for a long time. My hearing/ear checks are ok--sometimes a little build-up--no vertigo. When I am near faint the ringing gets really really loud. It's 24/7 with me (altho I'm not aware of it when sleeping).

I've been on 10 mg of Singulair for my asthma and former allergies for over a decade. I also have COPD (non smoker) and Vocal Cord Dysfunction (upper airway obstruction). I still seem winded when POTS, when chronic fatigue is worse and definitly with high humidity/barometric changes even being on the Rx (but PCP--IM, wants me to stay on it after too many epidsodes of asthma/bronchitis that knocking on wood have been under good control).

I faint but run low BPs. Cardiologist tried me on Florinef but for some reason it made me too hyertensive (and I am menopausal). My kidney and adrenal function were fine. I think that was why the cardiac specialist told me that it may take a lot of trials and errors to find a good fit for me. Aldactone made my potassium too low and I could not tolerate Mestinon (severe abdominal cramping/vomiting when taking with Midodrine--but my BP still ran low). When cardiologist just tried Mestinon, it also made me too hypertensive. And if I exercised the least little bit (including some house chores/the blood pressure went too high). I have orthostatic hypotension.

A rheume who specialized in fibro diagnosed mine (cardiac specialist well versed in EDS confimed as well). As to who handled mine--depends on the problem I'm having, sometimes my orthopede (a lot), physical therapy (a lot), sometimes I have to see physiatrist, and neurologist had helped with pain (for my migraines) and a lot of those meds are supposed to help block nerve paths in general. If you get a good pain doctor you might be better off if you need better pain management. I've even had some alternative medicine (ie accupuncute). DH has tried 4 pain doctors (he seems to like this guy) but the other 3 he had only wanted to either do procedure after procedure after procedure (within weeks of each other) or therapy (which DH won't do). I had seen 2 pain doctors--the first I found to be one who was really pushing procedures and drug therapies I was not comfortable with if I had to drive and had to work. I told them I'd call after I checked my calendar to set up next appointment and never called or went back. (About a year later his license was suspended in 2 states). (That was the 3rd PM that DH's PCP sent him to--and I'd warned him. He learned the hard way and I think they had words when DH did not schedule another procedure when there). The second PM specialist I saw was the 2nd one DH saw who again did procedure after procedure. The only reason I saw him was because he'd told DH he could block the nerve to help my migraines. (I made appointment but he required 3 appointments to do it--one to talk to you/fill out forms/second appointment to do it/third for you to pay to tell him that it didn't work. When I had the procedure they way the staff were acting (including the doctor), I don't think they had ever done that before--and I certainly don't think they did it right (using just logic and common sense). I never went back for 'more options'. I forgot to add interventional radiologists have helped manage pain too and the ones I had were great. My rheume retired. I went to next closest one in network but nearly an hour's ride and she started charging private fee to be her patient (not reimbursable/billable to insurance company) so I discharged her. So I've been without a rheume. My PCP knows how she managed my pain and was willing to prescribe that for me if/when needed. Now my ortho is getting ready to retire. Hate the thought of going through all this stuff, starting out a beginner's level again.

Thanks, Katybug--I look for that (not whole lot of places in small home town to look, though).