dsdmom

Hi Jacquie, I used to get night sweats a lot when I was on Zoloft BEFORE I had dysautonomia problems. Also, my psych told me that it (and probably any ssri) can inhibit vasoconstriction, so maybe this is contributing to some symptoms. Out of curiosity, are you still going to see Dr. Novak now that he's left BMC?

OK, I am going to sound really ignorant, but what exactly is a narrow pulse pressure and how does one measure it? I feel like my pulse is very weak - is that what this means?

I don't know, I really think the headache was tied in to Florinef. My neuro is out but I just spoke to my primary who thought I shoudl try halving the dose - to a 1/4 of a pill - and trying to stick it out. He said the shakiness and the "just feeling weird" and the breathing issues I feel could all be related to the fluid shifts going on. My breathing has been off since I got this great dysautonomia but it seems a little worse (Zoloft made it worse too). When I asked how Florinef could be affecting that he said that the fluid shifts are happening everywhere, including my lungs, and it might just take a bit for everything to come to equilibrium. Sounds good...is it true? I don't know...but I guess I will try to stick it out through the weekend. I HATE that I am so nervous about taking drugs. I feel like such a wimp but I don't like all the side effects. And I feel like when I stop a drug it takes me a while to get back to "normal".

I started at .05 mg - 1/2 a tablet 2 days ago. I did not take anything yesterday - my headache is better today but now I feel weird. Like shaky and my heart is fluttering. I called my neuro to see if I should continue, maybe at a lower dose, but he is out until Monday. I just get so scared about taking drugs now that I don't know how I'm going to react. Anybody else get shaky/fluttery from Florinef?

Two questions: 1. If you've taken Florinef and gotten "the" headache, did you stick it out and did it eventually go away? 2. If you chose to stop Florinef because of the headache, when did the headache go away? I took my first dose yesterday and have had a terrible headache since. I did not take any today....when will it stop?

I had a lumbar puncture a couple of months ago in the ER and the test itself wasn't that bad - just uncomfortable. But the aftermath was terrible - they did not tell me to drink fluids, lie down, etc... and I had the WORST headache for 6 days. One thing to realize is if you do get the headache, you will be relegated to lying down anyway because getting into an upright position is what makes it terrible. Normally lying down makes your head feel better. So, I think either way you look at this, you'll be lying down - whether you have a spinal headache or whether you are trying to avoid one. However, that said, and as Poohbear said, I think if you don't get a headache in the first 24 hours or so I think you'd be fine - I think they come on pretty quick. Good luck!

I don't know of any literature, but I just got home from an appointment with my doctor and when I mentioned my newly acquired drug sensitivities to him he was not surprised at all. In fact, he said that was very common for people with autonomic disorders.

Hi Mary, Sorry, ANS - Autonomic Nervous System specialist. I've seen neurologists before, but this doctor concentrates on the ANS.

OK, so I just got back from seeing the ANS specialist for the first time. I liked him, and it was good to see him, but I am very confused. I have yet to have any autonomic testing done and I assumed he would want to do that right away. He said he didn't want to do any testing right now because I have had so much testing already (which pretty much rules out everything else). I went over my story for him, in a shortened version, and gave him my printed story for further reference. He asked why I hadn't been put on Florinef or anything else and I told him that another neurologist I had just seen was the first person to mention it but had told me to see someone who specialized in ANS issues. So Dr. Novak, the doctor today, talked a bit about POTS and a bit about autonomic issues in general. He did not diagnose me with anything in particular, although it was understood I have autonomic issues. He said he didn't think that autonomic testing was really that necessary in my case since my blood pressure does not change upon standing. And if I have POTS he would prescribe the same treatment. So he sent me home with Florinef and I am starting .1 mg every other day for two weeks. I told him that I am super sensitive to drugs now (particularly SSRI's and SNRI's) and he said that was very common. He also said that, therefore, he was a bit worried if I would be able to tolerate Florinef. I will see him in 2 months and we will then discuss further testing, including a skin biopsy. I guess I am most confused about this. He talked about nerve damage - autonomic neuropathy? What? I have nerve damage? I'm so confused! Why do I have damage? I asked him why he thought I developed my issues (pregnancy, hemorrhages, hysterectomy, PTSD) and he said it was hard to say. But he did say that he expected me to get better. But that it takes a long time for nerves to regenerate. They grow/regnerate 1-2mm a day...so I guess it could take years? Can ANYBODY help me understand what he is talking about with nerve damage? I just thought my system was screwed up....I didn't know I had actual NERVE damage. Do we all??? And how would skin biopsy results differ from nerve conduction studies? My nerve conduction results were "the most normal" the doctors had ever seen. Also - what kind of bad reactions could I expect from Florinef?

Sophia, I was not trying to say you were being insensitive - I just mean that I have heard people say that it was "so easy I went shopping the next day" (like you said) but in reality, it IS a big deal and those people just don't tell you that they actually didn't feel that great. So the rest of us are left thinking that there's something wrong with us when we don't feel good enough to go shopping the next day! Suzanne, regardless of the type you have, just take it easy!!!

I had a laparascopic hysterectomy last year (not planned) and, unfortunately, it was the catalyst to all my POTS issues. However, I had also been put through two other surgeries within weeks of the hysterectomy so I am sure my body was just completely worn down. Recovery on anything laparoscopic is better than anything "open" but don't be fooled - it is still major surgery. Some people will tell you it was easy...you may be very lucky and have this experience, but in general, have realistic expectations going in. Just know that you're going to need extra time to heal. Laparascopic surgery is STILL surgery and is still a big deal (In my previous life I worked in the OR) for your body. I am sure everything will go fine, but just go into whatever surgery you are having expecting a long recovery and then hopefully you will be pleasantly surprised if/when it's shorter! Just do what you can in the hospital - yes, walking is good, so try to push yourself as much as you can. But don't be bullied by the nurses or anybody else. YOU know your body best. Good luck!

Just to echo what doctorguest said, it was my primary care doctor that basically told me she doesn't want to treat me. I assume because I have had so much happen to me in the last year and am a complicated case. I don't think I'm a bad patient, maybe just more demanding of her time because I have had a lot of problems! It is VERY frustrating, particularly when they are supposed to be HELPING you... You WILL find someone - it just stinks that you have to keep looking.

Was the neurologist actually consulted or was this his/her office staff telling you not to come in? If you did not speak to the neurologist directly, could you send him an email and explain the situation? Of course if the neurologist was involved in the decision then this might not do any good. Either way, I am really sorry that you are going through this.

I'm still pretty new at this dysautonomia stuff and was wondering if the fatigue I have been feeling is "normal." It is way past being tired - it's almost like being drugged. I could go to sleep in the busiest, loudest, brightest place no problem. Is THIS what you all mean by fatigue or does this sound like something else? Thanks!

firewoman, sorry, had to laugh at the score.... you sure dys only has 30?

I get this too - but I also get very short of breath. Do you have that feeling as well?

Angela, I JUST had the exact same experience as you soon after staring 37.5 mg of Effexor. I couldn't figure out why I was having such awful chest pains and then looked up the possible side effects online and saw that listed. My psychiatrist thought it would be weird, especially since 37.5 mg is such a small dose, but she is willing to believe anything these days because I just seem to be SO sensitive to drugs now. I stopped Effexor 2 days ago and did better yesterday. Last night I woke up in the middle of the night though with excruciating pain. I know the drug can take a few days to get out of your system completely so I'm hoping it's gone soon. How are you feeling now? Are you still on Effexor?

Becca, I recently tried Celexa for depression and it was TERRIBLE for me - sent me into my latest tailspin of tachycardia, dyspnea, fatigue, etc... basically all my symptoms got worse. That said, I have not been able to tolerate any ssri since I have developed dysautonomia. I used to be able to... But everyone reacts differently to each medicine - I know there are people on here that can take ssri's without the problems I had. So I would say you don't know until you try! Good luck!

Julie, Do you have asthma or some other identifiable pulmonary disease? Or was Singulair just prescribed as a way to help breathing issues you have with dysautonomia? Do you have any abnormalities on your pfts? Mine shows low diffusion levels (DLCO at 65%) but that's it - no asthma. Am wondering if it would be worth giving Singulair a try. Thanks!

Hi Valerie, I had a little girl last November (can't believe it's almost been a year!) and I, too, had hyperemesis. So I can relate - it was beyond awful! When do you think your POTS started - do you think it is at all related to your pregnancies? I belong to another forum about dysautonomia as well and there's a handful of us on that site that had hyperemesis. I don't think there's a connection, but who knows!

Radha, I have the same types of breathing problems but have only tried albuterol (fast acting inhalor) to no avail - since I don't have asthma. I'm interested as to why you were prescribed Singulair - my doctor did not think it would help. Please let me know if it does - I would love to find some relief!

Hi Ling, I am so sorry for what you are enduring. Although I am new to the forum and don't know your whole story, there are a lot of similarities with mine. I had a little girl in November and then had several life-threatening complications, surgery after surgery, transfusion after transfusion, and finally a hysterectomy. I have been in and out of the hospital more than I like to remember - I barely saw my daughter for the first 3 months. I, too, struggle with the idea that I can only have one child. I am only 30 years old and wanted several...I choke up just typing this. I love her so much and I try to make myself happy with just her, but it's hard. Out of curiosity, when exactly did the POTS start for you? Feel free to PM or email me. Take care of yourself!

Susan, If you are starting to feel well enough to do some small things, I think it is important to try and develop more strength and stamina. Easier said than done, but have you thought about physical therapy? I went through 3 months of it and it made a huge difference (until I had another setback) but now i know that I can get there again. Of course now I'm just trying to get back on my feet and the mere idea of going to therapy is exhausting! But I know I have to start doing it again otherwise I will lose more strength, etc.. Your physical therapist will be able to work with you to make sure you don't over do it - that you push just enough. Could you talk to your doctor about prescribing you some? Or, could you join a gym that has free use of personal trainers? They may be able to help too but I would start with a physical therapist if you could. Just a thought - I am happy that you are doing better!!!