lgtaylor100

I find that getting in the shower and turning on the cool water sometimes breaks the cycle and makes me feel better temporarily.

My ANS doctor recently started me on .1 Florinef. Previously he started me on .05 and I felt no improvement and no side effects. I feel worse since starting the .1 and because my symptoms are so random I really don't know if I am just doing worse or it is caused by the new medication. It seems my adrenaline surges are stronger and last longer. By late afternoon and evening I used to still have POTS symptoms and fatigue but I felt calmer than in the morning. Now I feel anxiety even into the evening. Also I am more dizzy and have a funny feeling in my ears that feels like they are filled with water. I have hyper POTS; i.e my blood pressure goes up when I stand in addition to tachycardia and I have excess sympathetic activity (4X normal) What has been the experience of others with hyper pots who have taken or currently take Florinef? My doctor said to stay on it for two weeks regardless of side effects. He feels that I give up on medication too soon. Lynne

Hi Puppylove - I believe my POTS was started by a series of very stressful family events. One of my doctors told me that he suffered from POTS after his mother died. (He is now recovered). I would also be interested in hearing if other people feel that stressful events jump started their autonomic dysfunction. Lynne

Just received lab results with high reticulocytes and low CK.My doctor says that the high reticulocytes means that extra red blood cells are being produced due to some other event (bleeding ? ) He says the low CK means nothing it is only a problem when the CK is high. Is anyone aware of any dysautonomia related problems that may be connected with these lab results?I did a search on DINET and found nothing as well as a Google search that really didn't turn up anything that is related to dysautonomia. My doctor said to call him in a few days and he will let me know what if anything further needs to be done with these results but my guess is he will not be thinking about anything dysautonomia related.

I got the red pinpoint dots at about the same time that my POTS symptoms started also. I have been told that they are age related (although that excuse wouldn't work for you, Naomi. I also think the timing of these eruptions was weird.

Happy Thanksgiving everyone.

My symptoms are somewhat better in the evening also. Does anyone understand the mechanism behind this?

I think you should have it also. I was told that the lip biopsy is the "gold standard" for diagnosing Sjogren's. I had it done last year and it really was no big deal, no more painful than a dental procedure. With everything you've gone through so far, it is definitely worth getting the procedure for the possibility that this will be your answer. Lynne

I also have thyroid nodules. They are small. The largest one is 9mm. No one has ever said that they could cause tachycardia. I find it really interesting that the doctor said that to you. I have also gone to see an endocrinologist and she said just to repeat the ultrasound in a year. Does anyone else have thyroid nodules or any information suggestive that there may be a link between them and tachycardia. Lynne

I keep asking my doctor about autoimmune dysautonomia. He says the dysautonomia panel at Mayo is experiemental and that IVIG treatments are experimental. Has anyone in the U.S. received IVIG treatments? If so what tests did you have done first and how did you manage to get these treatments. I know several people in other countries has posted that they have had IVIG treatments but I'm not sure if anyone in the U.S. has had them. Lynne

Severe fatigue Pulling feeling in my neck like my neck can't support my neck Dry eyes and dry mouth Tachycardia Churning feeling in chest Weakness Pain in neck, back and sacroiliac area Nausea in am Dizziness Lack of appetite all day until evening Feel extremely wobbly in am Poor sleep- wake many times during the night sometimes tight and and full feeling in chest Adrenaline surges Head pressure in back of head Temperature disregulation

I agree with you Katybug. In an article that someone posted recently it said that there are no tests for 50% of the autoimmune antibodies. I still think my dysautonomia is autoimmune. Also I recently learned from the same article that a virus sets in motion all of the autoimmune stuff so it's not virus or autoimmune it could be virus and autoimmune. Naomi - I'm with you. I just got a bunch of lab results all negative including the anti-ro and anti- yo for parenoplastic causes. The only positive results were some small elevations in liver function likely due to all of the medications that I take for the dysautonomia. Lynne

Thanks Babis - Now I just have to convince my doctors. Lynne

It could be either. I also failed the Schirmer test with different readings in each eye. I was tested for Sjogren's with blood work and also a lip biopsy which were both negative. I was told that my dry eyes and dry mouth are symptoms of dysautonomia. If you haven't been tested yet for Sjogren's though you definitely should do that. Lynne

Ever since I got sick I have had a feeling in my chest that I describe as churning. Maybe that is the same as your definition of vibrating. The churning goes on when I am most symptomatic even if my heart rate is not high. I have told doctors about this feeling and generally they just ignore the question. I am on medication now but this was one of my first symptoms before I knew what was going on.

On the same subject I would really like to know who has had the Mayo autoimmune dysautonomia panel and has tested positive. Following a positive test what kind of treatment did you receive? I've been fighting to get the panel but there really is no point if there isn't a treatment for autoimmune dysautonomia. Lynne.

Babis - This is the test I am attempting to get. Once you were diagnosed with autoimmune dysautonomia what treatment did you get? Lynne

I had the C3 and C4 complements last year when I was being tested for rheumatological disorders. My C4 was slightly elevated and I was told that low complements are indicative of rheumatological disorders and that elevated complements mean nothing. Now I am wondering. Does anyone have more information on this.

Mirapex is often prescribed for restless leg syndrome. What you are describing is not exactly restless leg syndrome but you might want to ask your doctor about it. Lynne

Thanks everyone for your great suggestions. I think for now I will have that talk with him that Songcanary suggested and see where that goes before I start looking for another doctor. I do already take my husband with me to most appointments and it has been helpful. He has been a good advocate but at this point he is frustrated too. My primary doctor talked to my new ANS specialist, who I also like, and he said that the Mayo autoimmune panel is mainly for research. I don't think that is true but I will talk to him. Naomi - I did see the endocrinologist already who knows nothing about POTS but ordered labs that could indicate a pheo or a pituitary problem. Also cortisol. Anyway today I had a pretty decent day. I went for a short walk and sat in the park for about an hour. Thanks again everyone for your suggestions. Lynne

Thanks Essie : I do have some of these symptoms, not all. I do not have inflammation though. I know that because I had blood work to rule out other rheumatic disorders. I do I have an excellent rheumatologist who probably does have EDS knowledge. I don't have an appointment with him until January though. Is there a good treatment for EDS? Thanks again, Lynne

Essie - When were you diagnosed? I am in my 60s and the symptoms only began a year and a half ago. Do you think it is possible for EDS symptoms to show up this late in life. I do have very sensitive skin (dermagraphia) and definite multiple eyefolds. One of my doctor reports says I have mallampati 1-2. Does anyone know if this is cerebellar tonsils?. I also do have the muscle fatigue and pain but that could go with a lot of things. At this point I am so worn out that proving my case with another doctor would be hard for me to do so any information I could get here would be helpful. Then I could be reasonably certain in order to make my case. I'm not sure which test you mentioned I could look up on the internet. I'm sorry if I missed it. Suffering from extreme brain fog today.

I was told that it was not dangerous unless the heart rate went to 150 and stayed there.

I am going through a bad situation trying to get the Mayo dysautonomia autoimmune panel approved as in network by my insurance company. It needed to be approved by my primary doctor,who I liked up to this point and who ran lots of tests for me to rule out other disorders. The doctor came up with many excuses as to why he had not called the insurance company ( couldn't get through, didn't have the number of the tests. didn't have the direct number of someone he could call). None of this is true. It is always easy for me to get through to the insurance company, I did give him the number, and the test numbers. Finally last Friday he got through to the insurance company. He told them that the patient (me) picked the tests from the internet. They also contacted one other doctor. Those of you who read my post about the neuro-muscular doctor may remember that he said I didin't have POTS because my blood pressure stayed the same or went up on standing, even though my heart rate went up 50 points on my TTT. Basically, I did pick the tests from the internet. I got the info from the DINET website section on causes, one of which is autoimmune and which suggests that the doctor contact Mayo labs for info. Also, through this forum I have learned that many have had this panel done. I do have other doctors that say I have dysautonomia, but the insurance does not have the records from them either because I had other insurance when I went to these doctors, or because I went so recently that the insurance company doesn't yet have these records, My primary does or will have all of these records. I am devastated and feel betrayed because my primary who I thought was my advocate let me down and because the neuro muscular doctor's lack of knowledge about POTS caused this problem. I feel I need to continue to see my primary because I have been very sick lately and do not have the stamina to go doctor shopping and I did like him up until now. I said I would get a copy of my TTT to him today and asked him to please call the insurance company back. He said he would do it but at this point I don't trust him. Any suggestions would be greatly appreciated. I felt supported up until now, but without this support I am starting to feel hopeless. Lynne

Essie - What kind of doctor do you go to look into this issue?