Annaliese

Rachel, so does your son have a genetic IgA deficiency ? Sorry to ask so many questions.

Rachel, was your son's POTS getting worse at the time he started IVIG? Ie, do you think it was the IVIG that made him worse or was he getting worse anyway?

What a terrible ordeal you and your son have been through. I'm so glad to here he is now 75% better now. What an improvement. Thanks for letting me know that IVIG made your son's POTS worse. That's good to know. It's hard to make decisions on treatment when there's so little info. I really hope your son continues to improve Rachel.

Ancy, I'm going to try to research first then pursue if I think it will help. I understand it's super hard to get so I don't want to go through that process unless I'm sure I want it. I've been sick for 6 years. Initially I was bed bound for most of 3 years. I get about a bit now but I need help to look after my kids, I don't do housework except for the washing and I can't work. My worst symptoms are OI, hormonal probs, chest pain and diarrhoea). I have standing still times of 5 mins. I don't faint but get terrible chest pain and diarrhoea if I persist in standing. I also have a lot of visual system and ear problems. I can't look at things unless they are directly in front of me and have problems with screens. The the rest I'm pretty much common dysautonomia symptoms ( sound and light sensitivities, anxiety, polyurea etc) with joint pain. I'm also having trouble fighting infections but my immuno can't find a deficiency. I'm not sure I'd want to have IVIG if I would have to continue having treatment forever. If it got me slightly better with a few sessions and I stayed that way I'd be very happy with that. When I search for articles though they only ever seem to talk about short term outcomes.

SarahA33, thank you for those links. Interesting that a lot of pregnant POTS ladies develop severe vomiting. That happened to me. Whenever I google pregnancy and POTS I can't seem to find much on pregnancy actually triggering POTS. I started to feel really quite ill at about 5 -6 weeks I think it was. Hospitalisation only occurred at about 33 weeks for "atypical preeclampsia" (ie dysautonomia). I then got much worse after the c section.

MomtoGuiliana how are you going these days? I remember your name from years ago.

Looneymom, thanks for replying. Sorry to hear your son got worse on IVIG. Has anything helped for him?

Ancy, wow, what an amazing response. I got a bit excited reading that. Did you develop dysautonomia during pregnancy? Have you stayed at your new and improved health levels despite not continuing the IVIG? I'm sorry to hear that your insurance won't cough up, especially since you've had such a great response. Do u mind me asking what your nonspecific markers of autoimmunity were? ANA/CRP perhaps?

Clb75 I'm so sorry to hear that you developed such terrible problems in pregnancy. Being housebound totally *****. Were you healthy prior to your pregnancy? I was, well mostly-I had a bit of chronic fatigue and IBS but that's all. I'm not approved for IVIG but will try to get it if I think it will help.

Does anybody have any theories on what the mechanism is in pregnancy-triggered dysautonomia / POTS? Can it be put in the same basket as other stress triggers like car accidents/surgeries? Does anyone know what the mayo's take on this currently is?

Hi, Has anybody on here had IVIG to treat their dysautonomia/POTS? Of so, did it help?

Julieph85 did you ever get IVIG?

Thanks everyone for commenting. I'm glad u had success. Scuba diving is such an amazing experience. How did u guys get past the dive medical questionnaire though?

Has anyone tried scuba diving? How did you go? I have hyper POTS and very much like floating around in water due to the anti-gravity effect. Just wondering if scuba diving is a no no or not due to the compressed air situation.....

During my first pregnancy I developed mild Dysautonomia but at the time I just thought it was chronic fatigue. It took me 3 years to work up the courage for a second pregnancy. During my second pregnancy I became extremely unwell and was hospitalised with hideous symptoms. I was dx with Dysautonomia, was bedridden and could not look after my children. It was disastrous and I was utterly miserable (and so was my partner). My sister looked after my kids for three years and my partner had to take 9 months off work. 4 years on and I have I improved, but I still need help looking after my kids and cannot work. I still spend a lot of time in bed. I know of another woman who developed Dysautonomia during her first pregnancy (but was not diagnosed), then went ahead and had a second and she ended up in the same boat as me. Whether pregnancy causes worsening of symptoms depends on your cause. I'd say if pregnancy caused you to get Dysautonomia in the first place, think very carefully about risking it a second time. Pregnancy causing Dysautonomia is rare so I'm not sure how many (if any) of those patients were included in the study that Ramakentesh mentioned. As a side note, both myself and the other woman have responded to antibiotics. Pregnancy suppresses the immune system so a latent infection may have been allowed to surface.

Why ask about the head fwd?

Issie, yeah it wouldnt be great to have lyme but i have to say im hoping i do have it so then i can attempt to treat it. Ive heard of some people who were quite disabled with lyme and were treated and are much better. Whats interesting is that my friend was well and her lyme symptoms only started when she got pregnant. So, it seems her immune system was controlling it but as you know in pregnancy the immune system functioning changes. My point is i think with lyme there can be a long delay between getting bitten and having severe symptoms like dysautonomia.

Yeah, im sending my blood off to igenex on tuesday. Issie, it can be hard to get rid of CHRONIC lyme with antibiotics. I dont know much about treatment yet but from what ive heard unless you get the antibiotics straight after the tick bite then the lyme is much harder to treat and people can have lyme specific antibiotics for 6 months and still not get rid of lyme. If you got bitten, had the red ring and then got flu like symptoms i would def get tested if i were you. Some people suffer lyme symtoms for 20 years before they finally get tested and diagnosed.

Testing is thru igenex but its really complex to decide which test to have if you dont have a lyme dr. Each test looks for different things like antibodies or lyme DNA. They also look for coinfections if you want. Im just gonna go overboard and have every tom **** and harry test they have to make sure i dont end up eith a false negative. You can ring igenex or they have info on their website.

Lyme is a VERY crafty bacteria. It has many diff ways of avoiding being killed by our immune symtoms and also antibiotics. When i googled the symptoms of lyme i have every single one- inluding the MS- like brain lesions (4 neuros have said i dont have ms). Theres a really good documentary on lyme which you can rent from amazon called "under our skin". Very alarming.

Have you been lyme testing issie? (hope you dont mind me asking?)

I also have high NE when standing. Ive had terrible anxiety issues. Got so bad i could eat or sleep. Things that work for me are

1) valium

2) beta blockers ( but a very small dose and frequently ie in the morning and at 2 pm (not at night). 5-10mg propanalol worked well.

3) very mild recumbent exercise every day. I started with 2 mins on the recumbnt bike and built up. Recumbent yoga.

4) giving my body a break by staying recumbent

5) low dose naltrexone

Re valium, i got used to it ver fast so i only take it once a week. The thing ive noticed about it is that even after the valium should have been excreted, i remain calmer for a few days. Its lmost as though anxiety stimulates more anxiety. If you break the cycle then you have a few days of relief. Ive had no problems with being addicted to valium. I dont crave it at all. Its just that it has less and less effect each time i take it.

Re propanalol. Propanalol decreases blood vol and also is excreted rapidly. So if you take too much you could be triggering more epinephrine through via the endocrine system triggering the sympathetic nervous system.

So rich did your pots start after your tick bite? Ie do you think lyme caused your pots?

Rissy- is your dr saying 70% of the worlds population has lyme or 70% of people with lyme symptoms who get tested turn out o have lyme? Or is he saying that the test brings back a high percentage of false positive results?

Thanks for those links MomtoGuiliana. To everyone... I am wondering whether EDS people show more dysautonomia type sysmtoms than the average person with lyme and if they do is it due to adrenergic supersensitivities?. Ie if the autonomic neurons in an adrenergic supersitive person are affected perhaps that leads to the crazy seesawing of the servomechanisms that control autonomic function more so than in a person with normal adrenergic sensitivity......what do you think?

Hi Issie

Theyve just found out so theyre not sure about treatment yet. One option is to go to europe for treatment. Ive requested a test kit and am waiting for it. Hopefully i will know if i have lyme in under a month.

Thanks for this potluck