Annaliese

Thanks for the posts everyone. I can see from the articles on dys that SSRIs are often prescribed, however i tried lexapro and it was a disaster-white knuckle anxiety and hideous diarrhea. In the end i only took 2 pills before i couldnt stand it anymore. Now i am on no antidepressant because i am not wiling to try another SSRI and dont feel i have all the info i need in order to make the right non-SSRI selection. Under no circumstances would I trust a psychiatrist to make the selection for me as none of them have even heard of dysautonomia. The thing i am most concerned about is anxiety, if i get any more anxious than this i think i might explode into tiny droplets of adrenalin. For people suffering from anxiety, what have they found to be the best anitdepressant? My blood pressure gets too low when lying so i cant take anything that lowers BP.would be very grateful for any help.

Issie, am very relieved to hear that your tumors arent cancerous!

So basically you are saying that a negative result is meaningless, ie that it doesnt rule out autoimmune diseases that we dont know of yet? A positive result on the other hand is useful in that it determines the cause. But, after a positive test result, is the only option IVIG treatment?

I have constant tinnitus and it feels like my ears are under water. It started when the dys did.

Rang Mayo and yes, only one sample is required. Also they said " AChR" was the acetlycholine receptor antibody test.

I am very interested in this too. I had sudden onset dys after becoming pregnant. I have sore joints and suspected SICCA syndrome. I asked my dr here in Australia to write a script for blood testing(it gets flown to the mayo) and before i have it done i would like to check she has written the correct thing as it costs 4000 dollars. She has written "please send for testing of nicotinic ganglionic acetylcholine receptor antibody". The 89904 autoimmune dysautonomia evaluation that the mayo offers seems to include a lot of things. I am wondering if only the one blood sample is required?

Issie, it sounds like you've had a lot to deal with for a long time. It's tough trying to problem solve all the time isnt it? You mentioned you had a brain tumor. My dad had one (a very fast growing one in the worst place- his brain stem) diagnosed 7 years ago and was given 3 months to live- he is still live (with no tumor) today. For his treatment we followed the recommendations outlined in the book by Ben Williams. Ben was/is an academic and has provided an excellent review of literature including the benefits of non prescription meds. This book is EXCELLENT! Im not sure if your tumors need treating or not but thought it harmless to pop in the ref anyway. Anyway, i hope you dont mind me diverging from the dysautonomia topic! Btw, tried florinef today and it gave me a big headache!

Issie, that's tremendous that you can go to the shops! I tried it and lasted 2 mins. Havent gone back since. Do you mind me asking how your pots started? Mine started in late pregnancy but i think i had a bit of CFS going on before that plus IBS. I have been very ill so havent been able to do much reading until now and have only cottoned on to the fact that someone like me with orthostatic hypertension could possible have LOW blood volume. That's thanks to Ramakentish. So, i have literally just sent off my partner to pick up some florinef. Have you tried it? The weird thing that's happened over the last year is that my standing BP has gone way down and now i would say i was hypotensive with a very narrow pulse pressure (eg 90/75). Also a year ago i had HUGE anxiety which had to be treated with doses of valium suitable for a horse. Now my anxiety is about 1/4 of what it was. I overall feel like i am slowly getting better but not by much. Do you think you have improved or do you think you are just better medicated?

Thanks for the info issie. It's funny you should mention Ramakentish. I have noticed he is very knowledgeable and been searching for everything he has posted. Its a very good point you make about good diagnosis not always leading to effecfive treatment. I agree. I have read countless papers which have tried to categorize Pots for example into different categories and then recommend treatments based on the classification. The trouble is that none of us seem to exactly fit into these categories and even if we do, the treatments can do more harm than good. The drs are only trying to do the best they can with the info they have. More research needs to be done investigating specific mechanisms (eg like the paper identifying the gene resposible for NET deficiency). At the moment im going through every drug one by one to see if it helps. How is your health right now?

That's really helpful. Thanks very much. I'll check out the links. : )

Thanks everyone for posting. I cant believe a tilt table test costs several thousand. Wow. I do know about the specialists in Australia. Australia does not have things like the antibody test i need though. Aparently i can send blood from here to the USA but it would cost 4000. I guess my thoughts were that if i have to travel on a plane anyway (i dont live in sydney or melbourne) then i may as well travel to the US where there is a greater throughput of patients. I have a very strange dysautonomia (dont we all) and i guess i am pessimistic about my chances of finding a dr here who has ever come across someone like me! It's interesting that the clinics post the costs of these tests up on the internet. I'll try a search. Meanwhile if there's anyone out there who knows first hand about these costs, can you let me know? Cheers. It does sound a bit like i cant afford the trip!

Hi everyone I live in Australia and a number of the tests i would like to have simply arent available here. I am considering travelling to the USA for diagnosis (i think i might have hyper pots). This is going to cost me a huge amount of money because i would need to travel in business class (so i can keep my legs up). It is also going to be very stressful for me as i am quite ill and the travel time is about 20 hrs. Given these considerations i cant afford to make the wrong decision wrt chosing the best clinic/Dr. Would anyone be willing to make some recommendations? Ideally id like to be away for only a week and perhaps be admitted so all the tests can be done in one volley. Any help you could give me would be much appreciated. Btw, do any of the clinics have websites which list the tests they have available? Cheers!

I have white matter changes in several areas. 4 neurologists have said they dont know what has caused it. It's not MS.

I have hyper pots and recently tried lexapro. After 24 hrs i developed severe nausea and diarrhea. In the end i only took 2 tablets before deciding to stop. I expected some diarrhea but this was ridiculous- i would have ended up on a drip!

I have hyper pots and was put on an SNRI by my dr. Does this sound silly to anyone? SNRIs inhibit the reuptake of noradrenalin and I have way too much noradrenalin when I stand. Wouldn't an SNRI make me worse?

Yes, I have fibromyalgia which started at exactly the same time as my hyper POTS (sudden onset). I am also currently looking for remedies! I was diagnosed with SICCA syndrome plus costochondritis and also temporomandibular joint disorder. TMJ disorder is the most annoying for me.

Hi Corina. I wasn't advocating the use of pressure stockings at night. I used them as an experiment to try to gain some insight into the cause of my nighttime flushing. Through this process I solved the issue (ie I dropped my beta blocker dose) which meant I went from not being able to sleep to having completely restful sleep.

For those of you with hyper POTS, have you discovered an ideal spacing for taking low dose propanalol? I take 20mg at a time, any more than that and I start to feel like I'm breathless. I take 20mg at 8am then 20mg at 12pm and 10mg at 4 pm. I don't take it before bed as my blood pressure gets too low. I am thinking perhaps I need to decrease the spacing as I am still suffering from a lot of anxiety. How often does everyone else take it? Btw my standing noradrenalin level Is about 1000. In my next appointment I am going to ask or a trial of clonidine. If I trial clonidine do I need to drop my beta blocker dosage? I can't come to the states and am relying on a dr who knows nothing about hyper POTS. My last Q is, is it standard to treat hyper POTS with beta blockers plus clonidine or have I got this wrong? Thanks in advance fir any help.

Hi Bren, this happened to me, the adrenalin flushing at night I mean. In my case, I managed to correlate the flushing with low BP. I tested the theory out by applying pressure stockings. Sure enough, the flushing greatly reduced. I also stopped taking my beta blocker at night ( checked with doc first) and after this the flushing completely disappeared. Have you checked your lying BP?

That's really useful info, thanks! I might wait a few more months until I'm slightly better before I swap to SSRIs then (still have huge anxiety). Would any SSRI be ok or are some better than others? Did you ever try clonidine?

That's great that your treatment is at a point where you can manage. Not leaving the house is soul destroying. For 6 months I didn't really leave the house except for medical appointments. I am so glad that phase is over. I am still very dysfunctional but at least I get out to the park with my kids sometimes. Did your dr say why you are mixed pd and hyper? Did you try SSRIs? I haven't tried then yet because I am a bit scared my anxiety will worsen.

Thank you for replying! Fortunately I was diagnosed a few weeks after symptom onset but only because my sister did some research for me and brought the articles into the hospital for the dr to read. Even though I was diagnosed with dys, the psychiatrist wanted to put me on antipsychotic drugs to ward off extreme anxiety (and admit me to a psych ward). I stopped seeing her for obvious reasons. At that point I started to self medicate (dangerous I know) and realized that increasing my beta blocker removed a lot of my anxiety. From then on my so called psych problems (ha ha ha) rapidly improved. In the beginning they put me on avanza (mirtazipine) even though I asked for an SSRI and it's taken me a year to get off it. I have been given a script for an SSRI and am VERY scared to take it because of the warnings about possible increases in anxiety. Did you have climb the wall anxiety? Did you notice your anxiety increased when you took the SSRI? When you say you were dizzy, did you have low BP when standing? I have high BP when I stand. I do get vertigo where the world seems bob up and down a bit but this is a vestibular problem rather than low oxygen to the brain problem. I world be very grateful if you could tell me more about your story.

Hi Joe. Thanks or your reply. It's very interesting that your blood pressure goes up even though norepinephrine does not. My standing norepinephrine levels are elevated and I have all the sympathetic overflow symptoms like polyurea. Other than catecholamines levels I haven't been tested for anything to differentiate between the 2 types. Does your dys have an autoimmune origin? Why does your BP go up?

Thanks Corina. Some of my family live in the Netherlands also : )

Hi everyone. I am new here and was wondering if someone could help with interpreting the definitions of PD pots and hyper POTS. In one of Grubb's articles (Postural tachycardia syndrome, Circulation 2008)he says for patient with the PD form that "Many of these patients report that their symptoms begin after an acute febrile illness (presumed to be viral), as well as after pregnancy, surgery, sepsis, or trauma7. It is presently felt that in many patients this form of POTS is an autoimmune disorder." He then goes on to say that for the Hyper form "These patients often describe a more gradual and progressive emergence of symptoms over time rather then an abrupt onset." What I dont understand is this: I think I have hyper pots because I have high BP on standing BUT my illness was sudden onset (started immediately after pregnancy/c-section). I think my POTS is caused by autoimmune disease as the onset of fbromylagia was concomitant with the POTS onset. So, as you can see I dont seem to fit into either group! I really want to understand this as I am desperate to 1)know my prognosis and 2) form an appropriate treatment plan. Any help you could give me will be greatly appreciated. I should also add that I have had autonomic dysfunction all my life in the form of hyperhydrosis. I do not live in the states so don't have access to the extensive diagnostic services available there.