Kaitlyn

Hi Josh - Im sorry I'm not sure about your question and wouldn't want to try to answer such a serious one - not being a physician. What im confused about is why the dr you saw couldn't diagnose whether or not you had POTS. You don't necessarily have to be blacking out to have POTS. And based on how variable it is symptoms change from moment to moment. The main criteria for diagnosing POTS is a 30 or > 30 increase in HR within 10 minutes of passive standing on a tilt table test. Some research I have seen indicates this criteria should be relaxed a bit because not all patients will respond within 10 minutes at every testing. IST and POTS are often seen together. I have both. What was he basing autonomic dysfunction on? IST - Some people are troubled more than others by heart palpitations and related symptoms. For me, even being on the B blocker I still have symptoms but not as bad - they don't upset me. I just observe they are there and keep doing what I'm doing. My heart is healthy. As far as prognosis there is a good article on Dysautonomia International .org The low dose beta blocker hopefully will help with the tachycardia. Sometimes it can be tricky to find the one that works but hopefully the first one will do it Good luck!! Kaitlyn

Nope not the only one! I have stuttered and lots of times too my thoughts just fly out of my head and I can't form a coherent sentence - esp when I'm very symptomatic / pre-syncopal. I'm sure you can all relate!

That's how I feel about the benzos. I don't want to take them but I know they are 'shutting down' the vestibular system so my brain isn't receiving the false sense of imbalance. So I can WALK! That's a good thing. My cardiologist today said no Paxil. His concern is that it will lower my BP even more. I was leaning that way anyway. So much happened so fast when I was titrating up on the Topamax that I just don't have a clue if it's helping. At some point I want to try to get off the benzos and possibly try vestibular rehab. My neuro said I'm too much in flux at the moment. I'm sure she is right. im so glad the Topamax is working for you!! Enjoying the chat Kaitlyn

My tremors seem to effect mostly my right hand and arm. Sometimes my left hand but never as bad as my right it seems. Weird?! My legs will feel tremor-y and weakness from fatigue but OI but I don't think it's a true tremor. My Drs haven't said too much about it. I have just figured it's part of my new normal. It definitely gets worse with stress, excitement and fatigue. You?

You're welcome! I know you have your hands more than full. Hope you get on more solid ground soon. Too bad about the phenergen - it can be helpful in an acute situation! Happy I could provide some entertainment in the meantime. Had a chat with one of the forum administrators. I guess when they realized I didn't use an expletive they decided to loosen the filters a bit. Gotta laugh - can't cry all the time ? Peace Kaitlyn

Lattegirl- the fatigue alone (I know for me) can cause disorientation and mental clouding. I have cognitive impairment from the fatigue and brain fog. Sounds like maybe you were pushing it too hard. That's the thing when you feel good you do more and then pay for it later. I have learned it's all about pacing. And even then life just throws you curve balls sometimes! hope all goes well with the doctor and you feel better soon! Get some rest ? Kaitlyn

Stellaluna - exactly!mit comes down to cost vs benefit. I think I am going to pass on the Paxil especially if she is prescribing it primarily for mood and secondarily for pots and brain fog. Then I would rather try something else. She will be fine with that. I did some research last night. Part of the problem with Paxil and WD is that it gas a short half life 24 hrs compared to, say, Prozac of 4-7 days. You said you're taking Topamax? Me too. How much do you take? I've been on it for about a year for vestibular migraines along w low doses of benzos without which I could not ambulated or function with any kind of normal balance. Those symptoms are actually harder to deal with than my Dysautonomia I take 100 mg at bed if the Topamax. Not sure if it's helping or not?

Stella - Yikes is right! I did some research on Paxil and it has a relatively short half life which can increase withdrawal when you do get off of the drug. I am feeling very wary. I was on Effexor for a couple months several years ago and when I got off I was very sick, had lots of symptoms including brain zaps. Effexor is an SNRI which targets 2 centers in the brain where Paxil is an SSRI and only targets one. Pin any case I am nervous about it because I am very sensitive as well. Feeling caught between a rock and a hard place!

Ha! I didn't bring it up - she did. She wants me to start on Paxil and then wants to add either provigil or a stimulant (Ritalin or adderall sp?). Depends if the insurance will approve provigil. Apparently if you don't have narcolepsy they often won't. She said this combo will help w the POTS and the cognitive impairment

I take Topamax for Vestibular migraines. So much going on atm I am not clear yet on its efficacy. I also take low doses of benzos. I hate taking them but without them I could not function at all because of the acute dizziness that was constant. For me it isn't typically vertigo although I have felt that as well but rather dizziness and imbalance where gravity kind of sucks you right to the ground. It is the hardest thing in the world to describe. For acute vertigo promethazine (phenergen) can be helpful to get it under control so a person can get a breather to think again, get through some testing etc Kaitlyn

Sorry to hear it didn't work out such a great way to salt load but not if it increases gut issues. Hang in there!

Dizzygirls- you tried the baking soda or the salt capsules?

I haven't tried it. But I love salt and don't mind salt water or adding extra salt to my food. Before my illness progressed my normal BP was 90/60 so I think I always gravitated toward salt. Now when my BP drops it doesn't have far to go to get into the danger zone. I make homemade salt capsules and they help and don't upset my stomache the way therma tab will.

Hi Leeloe - How are you doing? Were you able to find a dr who specializes in POTS / Dysautonomia? I hope things are going better for you ?

Hi Lynnie Thanks! I had heard this as well and see my neuro on Monday. It's on my list of things to talk about.

Sorry to hear about the vet. Kind of like our tunnel vision Drs sometimes huh?! Awesome name sure hope your boy felt better today. I hope your fluids did their magic as well! I bet you are tired - the stress on top of all the rest! Thank you - it took a little time to get here but it has served me well. Trust me though - doesn't mean I don't still pout and complain lol Hang in there ?

Hello again Dizzygirls Amitriptyline was prescribed for me for vestibular migraines (which can cause both vertigo and dizziness) but I couldn't take it because it was contraindicated with one of my other meds. I was taking Midodrine at the time. I always always check with my pharmacist before starting a new med no matter what the Drs say. The only side effect I ever had from Midodrine was tingly scalp but that doesn't mean she hasn't developed an intolerance to it. We are all so sensitive to meds it seems. As far as the Depo, in my experience any type of hormone drug could cause hair loss. Another thing that I have read can cause it is low BP because of lack of blood perfusion to the hair follicles. A couple more thoughts and if I am being redundant to other posts forgive me ... My eyes are strained and it was hard to read every word. Has she had any imaging done? MRI? Or vestibular testing to rule out ear/inner ear problems? Probably not that but always good to rule things out. If she is having vestibular migraines (can occur with or without head pain) the vertigo or dizziness is excruciating. I can tell you from experience that it trumps any other dizziness I experience. It makes me completely dysfunctional. Sorry you are all going through this. I hope you get answers SOON! Hugs ? Kaitlyn

Hi Lattegirl Florinef didn't work for me. I had headaches, nausea, insomnia, increased tremors and intense mood and irritability problems. With that said, I am wondering if you are using any kind of compression being on your feet that many hours? I know if I tried that I would have serious blood pooling and BP issues. That could be the cause of the fatigue. Are you having any pre-syncopal eps? Take good care ? Kaitlyn

Hi Goodr - sorry to hear you had to go to ER again. But woo hoo the IV fluids do help right?! I started on Metoprolol (25 mg in the am and 1/2 tab in the eve) but my BP was tanking. Really tanking. I have a new EP/Cardio who put me on Nadolol 10 mg morning and night. I felt weird at first for about a week I guess during the switch but then things leveled off. Before being on a B blocker my resting HR was 95-100 and walking up the steps could cause it to shoot up to 145. Now my HR stays in the 65-80 range. When recumbent exercising I have a hard time getting it to my base rate for Physical Therapy. Happy you're getting some treatment. Beta blockers are tricky and it can be hard to find the right one but it is worth it to stick with it! Good luck Kaitlyn

Percythetrain - I just read your post about going temporarily blind from turning your neck. I am not giving medical advice but I will share a brief story as another thing to consider when you see your new dr. when I saw my new cardiologist he did a carotid massage. A major artery that runs up both sides of your neck. It was fine on the left side. When he did the right side I almost lost consciousness, my left hand went numb and my vision started going black. This is one set of symptoms I have when I move my head certain ways: to the side or to look up to get something from a higher cupboard or to put on eye makeup. The condition is called vasovagal syncope and often coexists with orthostatic hypotension (OH) and POTS. just more food for thought. On the other subject I never thought of it in these terms but I get it. I know sometimes I feel it is so much work just to breathe and I get anxious or frustrated in my own skin about it and trying to talk is way too much work. Hugs all ?

Oh no! So sorry to hear about your horse what's his name? I hope they can fix him up real quick for his sake and yours. I know sometimes it feels like it is such a tenuous hold we have on things. If one thing goes wrong it could start a spiral. Stay strong - all will be well ? I will send positive thoughts to both of you! That is concerning about the edema. One thing leads to another ... Are you elevating your legs when not riding? It's interesting you say that because I know I felt a bit 'poofy' after the infusion. Probably a dumb question but have you tried clear Pedialyte or other good rehydration drinks for in between infusions? I do know what you mean. For me I have decided to re-frame. I'm not 'sick'. This is just the experience my body is having right now. I have found one positive thing in it: it has given me the opportunity to slow down and see life in a different way than I did before. I used to be a blur of motion from the time I opened my eyes in the morning until I closed them at night. I didn't know many people, even younger than myself, who could keep up. Now I am still more. I have to be. I see more. It's an interesting vantage point ? Good luck! Update me if you feel like it!

Nymph - I just looked up Sentra PM. I had never heard of it but plan to talk to my neuro about it on Monday. I was recently diagnosed with cognitive impairment due to brain fog (Dysautonomia) and CFS. I wonder if this would help me get more restorative sleep?! Thanks for the post ?

Nymph - you are welcome! Good luck and I hope it helps ? I do drink salt water too. I love salt (lucky that way) so it doesn't bother me at all

Kris - I am so happy to hear that things are going so well for you! It is awesome to find ways to live your dreams in spite of ... Well, everything else! My neuro is going to set up a standing protocol in my chart so all the Drs in the system know under what conditions she wants me to gave fluids. They won't order them for maintenance. I'm not real sure what the thinking is behind it, just that if you can raise a glass to your lips they want you getting your fluids yourself. So the only way I will get the IV is if I am in a flare due to a cold or flu or crisis etc. I know there are other physicians in the area who are more generous with the fluids. If I get desperate I will check them out. the fluids did seem to help me as well. I am still really tired but did not start a flare - for that I am grateful! Happy riding! ???

Hi Kris4444 How are the IV fluids working? I had two bags administered last Friday after a particularly rough week. (a trauma in the family, no sleep, no appetite, lost 4 lbs in as many days, IBS acting up). I think it did help some. I'm still exhausted but I am hopeful it will prevent a full on flare. It was warm this weekend and I did seem to manage a bit better. I am on the other end of the spectrum. The Dr instructed them to put the fluids in 'wide open' so it was an hour per bag. BP was still 97/52 after two bags. She wanted systolic of at least 110 but I knew that wasn't happening. Hope things are going well with you and your riding Riding is one of my loves as well! Kaitlyn