abetterjulie

Hi, This is who I see. He gave me my diagnosis after I had a full TTT done by a cardiologist. He did a neuro exam, bloodwork, valsalva maneuver testing, a poor TTT, and a separate sweat test. He also did a very thorough history-taking. He doesn't do norepinephrine testing. I like him, but I am currently frustrated, although that isn't his fault. His secretary is kind of a mess, but he is the exact opposite, lol. Hope that helps!

So, what are the bad side effects? This is a drug I have also been considering...

1. Neuro pain 2. Exhaustion 3. Inability to stand w/o heart rate increasing 4. Loss of work 5. Sleep problems

It is strangely comforting to know that others are having such an awful time of it, too. Too bad we don't all live together! We could take care of each other on good days, lol. I am sorry that you are dealing with this, and I can completely relate. I was doing relatively well on the Midodrine, but now I am back to where I started. The quality of life issue is a challenge, and I have had to really rethink and rework my goals (again). It is a very lonely place to be. I feel like if we aren't "dying", docs don't really care. They completely miss the point...that we were functional, vibrant, "doing-stuff" kind of people before we became ill. None of us WANTS to lie in bed most of the day! How would they feel if they felt like they had the flu every day? They don't seem to care that we have pain. I have yet to be offered pain medication for my nerve pain! How is this possible? It is maddening. My friends all feel helpless. They listen, but they can't really wrap their heads around it. Shoot...some days I can't either. Anyway, I hope that you find a balance with your meds and maybe a doc that has more compassion. Love you.

I also have this. There are days where all I can do is sleep and pee. I find that the heat makes it much worse, so maybe that is why you feel it is getting worse now that it is warmer outside? It improved greatly when I was on the Midodrine, but now I am back to square one. It is so frustrating!

I was getting headaches and migraines while on Midodrine, and ended up with Thunderclap headaches. I have read some research that shows that it could have been causing cerebral vascular spasms, that could in turn lead to stroke-like effects. I hope they can find answers for you that prevent this from happening. This disease *****. I wonder if we should have a poll to see the difference in quality and quantity of migraines from before and after Midodrine usage?

Thank you. There is only one neurologist in the state that treats this, so I am sort of stuck. I like him, but the availability thing is now real issue. It hadn't been before, except for the initial appt which took almost a year to get. I am going to see my PCP on Thursday, to see if she thinks I should get a cerebral arteriogram or an MRA. I don't really want to get either, but I don't want to drop dead from a ruptured aneurysm either! I just need someone to tell me that the headaches were benign or be able to explain the reason I got them. They aren't the kind of thing that just "happens", it seems they usually have a clear pathology, and I am scared. I got upset last night over something, and my head started to pound. It wasn't the thunderclap thing by any means, but it scared me. My SBP was 107 at that time, which was the highest it had been all day, but certainly not "pounding" worthy. I really need some answers. I can't live in fear of having a SBP over 99. Thanks again.

After having the two thunderclap headaches, a visit to the ER with a head CT and a spinal tap (both normal), and then waiting all weekend to hear from my neurologist...he has told me to stop taking Midodrine. He wants me to take Periactin at night. While he acknowledged that my life will totally suck once again off the Midodrine, he can't see me. I have an appt in August, but as he said, that is far away. He "might" see me some Saturday if his clinic needs to be open in Columbia for a sweat test on somebody. All in all, not encouraging at all. What I got from him was: Stop doing anything that might cause it again, as it could be bad. He thinks I'll need to have more testing done. If it is the Midodrine, he will find another solution. ***** to be you. Keep in touch. Why can't he just order the testing now? He sounded like he was thinking I would need an angiography of the brain. Is there a reason I can't just get that done and over with so that I can enjoy my summer? I had plans, you know. I wanted this summer to be fun. I BOUGHT A SEASON PASS TO THE LAKE ALREADY! Sorry, but I am so so so sad and frustrated. I don't know what to do. I lie awake at night worrying, now. I thought I was over all this. I thought we had it figured out. I was just starting to accept my limitations, became grateful for what was left, even started moving forward with a home business...now what? Lower my expectations even more? Hide my sobbing from my daughter? Pretend I am fine with losing the whole summer to this thing? Maybe I should go see my primary care doc? She has no freaking clue, but she could maybe refer me to a LOCAL neuro that could see me before August? I just don't know what to do and I am sad and scared.

Well, just to update. I went to the ER after reading that my symptoms were classic of a head bleed. Had CT scan and lumbar puncture, both normal. Almost passed out and threw up with the lumbar puncture because my pressure dropped too low. I hadn't taken my Midodrine all day, and that was too much upright-ness for me, apparently. The ER doc said this isn't a migraine, and they call it a "thunderclap headache". He was able to rule out the bleed, but not able to figure out the cause. They said to come back if it happens again...which I pray it never does. I was doing the math today, and it seems like it happened about four hours AFTER my Midodrine. Of course, they had me take it after the puncture, so I guess if that is the cause, I'll know in four hours. Ugh. So, I will call Dr. Khurana on Monday and let him know what happened. Thanks for the advice and support here!

Dr. Khurana wanted to start me on Periactin. I don't know much about it, but last night I had another one of those SUDDEN onset migraines. I mean I could actually feel it WHOOSH up the back of my neck and behind my ears, and then the excruciating pain. I can't imagine having to deal with that level of pain on a regular basis. It would end any quality of life I have left. It took twice as much OTC med to make it bearable, so I am worried that the OTC meds won't work at all the next time. I called his office and asked for them to call in the Rx. I don't see him again until August, so hopefully it will work.

Sarah4, I asked about MCAD at my last visit as I was finding that Benadryl seemed to alleviate the migraines more than Advil did. He didn't seem to think that was the problem since I have no flushing, but I don't know if that is accurate or not. Seems like most disorders have exceptions.

Hi, I had the worst migraine of my life today. I thought Athena was going to spring forth, fully formed, and start whipping her spear around. Seriously. Obviously, I am feeling better now. I started having migraines for the first time over the last three months. I would wake up with them, and they would get progressively worse as the day went on and I tried to ignore them. I am wondering if anyone else has this as part of their disease, or is it a side effect of the Midodrine? Dr. Khurana offered me meds for them when I saw him early last month, but at that time, I thought I could manage them. I am wrong and will be calling his office. Thanks!

I am supposed to be taking 7.5mg three times a day (I weigh 138lbs), but have stopped taking the third dose. I find that it works fabulously well in the morning, not so great in the afternoon, and not at all in the evening. I follow up in August with my MD and will tell him this, then. I do get severe head itching from it, some days much worse than others. It the morning, it keeps my SBP above 99 for about three or four hours. This is usually enough time for me to eat something, shower, run errands, or whatever. What was the reason for stopping the Cymbalta? I found that to be a difficult drug to wean from, and it was very effective for my pain. I didn't like the way it made me feel emotionally, though, so I have stayed off it since stopping for testing.

I didn't have dark urine and ketones, but it didn't help me. Hopefully, you have stopped the extra salt. How much were you taking? It is possible that even with the water, it was too much. I am often surprised by how some will just say "add salt" without recognizing the dangers inherent in it. I would continue to hydrate and see your doc as soon as you can.

Wow! I have never heard of hashish oil. Good to know, thank you!

I tried this when my pain was at its peak. It helped with the pain and inability to sleep due to the pain. It also made some of my other symptoms worse. I would wake up feeling like I was starting to flare (shortness of breath, fatigue, freq urination). I have not tried it since the pain has gone away or since I am on Midodrine, as I didn't feel like I needed it for anything. My advice is to know the consequences of using it in your state, use it carefully as you would any other medication, and to keep a journal of how you feel before and after so that you can judge for yourself if it is helping or not.

So, I guess I need to ask Dr. Khurana about having both symptoms to see what he says. I take Midodrine for the BP, but have the diagnosis that matches the HR. I also have symptoms that more clearly match PAF, such as urinary symptoms. I have loss of sweating in my feet, too. It is confusing, and I'd really like to have it clarified. I am thinking of applying for disability, and I am pretty sure they would want that stuff to make sense.

Hi, My neurologist is calling it "neuropathic POTS". The clinical trial I am interested in defines POTS as an increase in HR without orthostatic hypotension. I have both. I have a BP that drops rapidly into the 70s and a HR that climbs into the 130-160 range. Am I missing something? Here is the clinical trial site: http://rarediseasesnetwork.epi.usf.edu/ARDCRC/studies/6101.htm TIA

Just wanted to say that I got a Pilates Gym recently, and I love it. I can exercise almost every muscle group while lying flat or sitting. It doesn't fatigue me the way every other type of exercise does, as I am not bending over or walking around. I found even yoga to be a problem before due to this. I got mine used, so I saved some money. Just wanted to share a positive!

I get neuropathic pain in my back, posterior legs, and rarely my feet. I was told it was part of the POTS. Cymbalta was very helpful, but I was unable to stay on it.

This is my biggest complaint right now. I am trying to find a balance between soluble and insoluble fiber to see if that helps. I bought some acacia powder to add to my diet to increase the soluble part. I definitely think stress is part of it, as well. Discussed it with my neurologist yesterday at my appt and he agreed on working on the diet angle, but also said that motility issues go along with this disease process. Good luck to your son on his finals!

I am sorry you are having such scary food issues. Food is such an integral part of our lives...spiritual almost...so it is doubly difficult when we lose that pleasure. I have also had some success with Benadryl. I hope you can find some answers and foods that comfort you and nourish you.

I get knots in my muscles and have a painful zone in my calves that can't be massaged because it is excruciating. I wonder if this is due to low blood flow to those muscles? I also get cramping of my legs and back with exercise, including just sitting for extended periods.

All of this has confirmed for me what I originally said. I need to do the gluten trial and get a biopsy to confirm that I need to have the gluten restriction. Like someone else said, if POTS is causing me to have bouts of diarrhea and fatige, and not gluten...then why restrict myself? I have enough going on without complicating it. I had rice all day yesterday and felt good. I had a BP that was effective and enough energy to clean up the kitchen a little. Today I am starting my day with an apple and we will see where that takes me. Thanks to all for the insights and suggestions.

I actually help run a local, organic produce/food co-op. I need to find out what the problem is and there isn't any way to do that unless I start from the beginning. We only eat foods certified gluten free, so I really don't think the issue is hidden gluten, but thanks.