SarahA33

Hello everyone! As difficult as the last few months have been for me in regards to the seizures, there really is always a silver lining that seems to come from all of it.. I have had to see 3 new neurologist's for my Epilepsy and Migraines, the good news is this: The hospital that my local neurologist's works at is a teaching hospital, so before the neurologist comes in, there always is a fellow that comes in prior and then stays throughout the rest of the appointment. Each neurology fellow that I've seen thus far has had pretty decent knowledge of POTS and dysautonomia. It's so refreshing that these residents coming from a neuro residency are able to diagonose and have treated a few patients locally. They're extremely curious and want to discuss the "hyper" feature and are always so willing to listen to me about how I was diagnosed and all of the other conditions it was mixed up with. Has anyone else noticed this? It gave me a lot of hope!

Hi Alison, I'm glad that you are able to find something helpful for you. I know how frustrating it is to have to take med's but sometimes we aren't left with much of an option. I was put on Midodrine about a year and 2 months ago and it has been really helpful for me. In the beginning, I experienced some of the symptoms that Jesse and some others on the forum have described.. tingly scalp, goosebumps, and it felt like my hands would fall asleep. It lasted for the first 1-2 weeks and then diminished despite the increase of the dosage. I was started on 5mg 2x a day and now am bumped up to 10mg 3x a day. Do you have a home BP monitor? I would suggest keeping an eye on your pressure's if you are concerned about a BP spike. Like it was said earlier, it's a short acting medication so it doesn't stay in your system very long. My doctor's main concern was supine hypertension after taking midodrine and then laying down, that's why there is the reccomendation of taking it 4 hours prior to bedtime. I agree with what Barb posted above also, I didn't find much benefit until I started taking a 10mg dosage and it was changed to 3x a day. I think charting your BP's are going to help your doctor decide if it can be increased or not, they like the data, (I was obsessive about it in the beginning and I initially had some related spikes that PRN clonidine lowered) Hope you are doing well... how is the midodrine working for you now?

Great Post Dengenesis.. Do you not sleep either? Lol I was using Ativan as an example of just one medication that is "controversial" with some doctors. (Is that the right word do you think?) As you're aware, Valium is another med that is perceived to be used for anxiety/panic disorder, but in my case it was given for two very different reasons. 1) Since Ativan is shorter acting, the epileptologist was concerned that I could trigger my seizure disorder and possibly cause a withdrawl seizure towards the end of the Ativan dose wearing off, and since Valium is longer acting - it was prescribed as an pre-cautionary measure to avoid that. 2) The muscle aches and stiffness due to the convulsions. My muscles, my entire body, feels like I've been hit by a truck due to the clenching and convulsing..The valium helps pre and post episodes very suttley. .

Raisin -- I completely understand the White Coat Anxiety. I get it, too..(with new doc's I also get White Coat HTN too!) It's so hard not to when you've seen so many doctors and have gone through so much. It starts when a new nurse takes my vitals and thinks her machine is broken, lol. Then, the doctor comes in and having to go through my entire history is almost like re-living it to a certain extent. It's quite traumatic for me actually, and a few others that I've talked to on dinet regarding this topic have the same feelings. It took such a long time and was a terribly scary and turbulant path until I finally got diagnosed.

Hi, Blue, Sorry that you were in the same boat with the burn like situation. It was horrible.. It started with a hot/flushing feeling on cheeks and forehead (kind of like what you described actually), and then turned into what looked like brush burns on my cheeks, then came the forehead and scalp near my hairline. I saw my PCP at the time who referred me to a dermatologist who told me I had impetigo. While being treated for that, the brush burns started actually turning somewhat blistering looking and then quickly turned open (broken) sore-like burns. I had asked the dermatologist if any of the med's I was on could be causing that and he assured me that they weren't, and since I had been around young children at the time I had just picked up the impetigo. I started researching on my own as I was getting worse with the meds the derm had put me on and called my hypertension specialist. The moment he saw me later that day he said those are amlodipine burns. He said a common side effect of Amlodipine is a tingly/hot feeling on your face, but for whatever reason, I had a super intense hyper-response. I ended up having to be treated by a wound healing specialist. I still have some minor pinkish spots that only I notice, that was about 3 1/2 years ago I believe. Thanks for the heads up about the magnesium loading. Interestingly enough, I'm going to be adding IV magnesium drips to my migraine treatments. Yikes. Have you had an ANA blood test to rule out any auto-immune issues? I flush so frequentlly also... I'll get blotchy, sometimes bright red or even purple-ish colors. My face and chest ("trunk") turns bright red, sometimes purple blotches and I flush and get so hot. This is weird, but my ears also turn so red and hot it's almost alarming to me if I look at it. I've been looked at for Mast Cell Activation... have you been screened?

Jgenson and Degenesis.. here's my thoughts on Clonidine Rx's.. I agree that it's much easier for a neuro to look at clonidine as a long term medication for treatment to lower NE levels. Also, like Degenesis mentioned, it's more commonly known by neuro's to treat migraines/certain types of vascular headaches...I think they are familiar with it working on parts of the central nervous system as well as having to monitor their patients more closely if they are also taking certain anti-depressants or Parkinson's Medications as they could potentially interact. When it comes to cardiologists, I feel they tend to look at it from a differing approach I think... blood pressure control and not a NE blocker. I've been told by 2 very well known cardiologists that unless you are using the Catapress Patch short term, that Clonidine is more of a last resort BP medication as a daily regimen. One said "It's like Nitro for heart attacks and should be better off used as a PRN/Hypertensive Crisis option". Also, a family member had OB/GYN problems a few months back and was Rx'ed a very low dose clonidine for post menopausal hot flashes. This medication has always interested me a great deal. I'm kind of a nerd, lol. I'm curious as to how you all view my thoughts on it -- agreements or disagreements requested, please! Real quick -- when discussing certain medications used for off-label purposes with new doctors, I have to explain to each new physician I see that Ativan, (Lorazepam) is not being used to control an anxiety disorder, but rather it's used to effectively lower my heart rate. It's incredibly frustrating (and potentially can be a setback for your care) when a doctor only sees the medication and doesn't see the patient, if you know what I'm trying to say. Unfortunately, there are medical staff out there that will refuse to not look outside of the box. Phew. Sorry about the rant!

I personally have not seen her. As I've mentioned in previous posts, my 2 treating and main physicians that diagnosed me are hypertension specialists (board certified in nephrology/cardiology) here in upstate New York.. I do however read her responses to questions in the dinet newsletters and have read articles and such that she's authored and co-authored. I'm guessing her Mayo background would prove helpful! She's actually going to be a conference speaker at the 2014 Dysautonomia International Conference being held in Washington, D.C. July 11th-14th. I thought that was pretty interesting. Man, I would LOVE to attend that conference. It would be awesome to be able to go...I can't travel that distance any longer. Not only from the POTS, but now mainly due to my Epilepsy. I'm too unstable right now unfortunately. Here's the link incase you hadnt seen it yet: http://dysautonomiainternational.org/page.php?ID=137 (Again, I typed it so I hope it's accurate)

Degenesis, Are you able to tolorate travel at this point? If you are in Ontario, is it a possibility that you can come to the states? In Buffalo, New York, there is a POTS specialist who is one of Dinet's Medical Advisors, Dr. Svetlana Blitshteyn. I believe she does phone consults also.. http://drblitshteyn.com/ **Hope that link works also. I am not able to copy and paste anything into my posts for some reason. Can any mod's help by any chance?

Hi Bellgirl, What type of articles are you specifically looking for? I have quite a few. Are you looking for hypertensive medications and dysautonomia mainly or just general ans? -Sarah

Raisin, I completely understand the "panicy" (I made up a word) and "anxiety" feeling. It's awful. I know many others suffer from this feeling as well-- because of the surges, we have absolutely no control over it. With that being said, I've tried to describe it to others as a feeling of a burning, flushing feeling throughout my body and just standing up sometimes feels like I'm running a marathon and unable to catch my breath, and on top of that - the feeling of falling backwards or the room starting to suddenly spin kicks into overdrive. Still, words don't give all that much justice and it seems like its almost impossible for people in my life to understand. Except for those on this forum. I hope your upcoming appt with your neuro goes well for you! And you wouldnt be the first begging for a pots med, lol. Gjenson, I wasn't aware that you had SVT. Sorry to hear of that.. I rarely get it anymore since I was given the Verapamil. It's worked very, very well for the SVT and I haven't had to increase my dose since I was put on it months ago. Hopefully your's stays put and continues to be somewhat managable for you

Hi Jade, I'm sorry to hear that you and your son are going through all of this. It sounds like you've got quite a lot on your plate. Hang in there and know that your among friends here. Take care, Sarah

Are you kidding me? So sorry. Usually, neurologist's handle POTS cases, but clearly Grubb is an Electrophysiologist, I know of cardiologists who handle it as well. My doctors who diagnosed me are hypertension specialists, but specialize in complex cases like mine. I saw almsot 30 doctors before I was correctly diagnosed. Have you seen a neurologist or found more recent neuro articles like Janet posted useful? Has your primary thought of giving you a referal to a specialist that can better help? Would you mind sharing which state you are located in..lots of others can probably jump in to help you, I'm sure. Also, Dinet has a list of physicians specializing in dysautonomia by state on their homepage.. you may find that helpful.

Degenesis, I was on amlodipine and was allergic to it.. I developed burns on my face. it was awful. I looked like a monster. I wasn't on it long enough to know if it would have helped or hurt. The Raynoids is certainly worsened by the midodrine and propanalol. The verapamil was given for svt and helped with the raynoids. You know the drill.. add another med to fix the one given before! Did that come out correctly? I'm not thinking very clearly at the moment. Reading up on the article you provided now. My hypertension specialists never mentioned diltiazem.

This is a Grubb Article from 2012. Not my favorite but some useful information is provided. http://www.bjmp.org/content/postural-orthostatic-tachycardia-syndrome-pots-evaluation-and-management

What are his sodium baseline levels in blood work and urine tests? Has he had IV Saline infusions in the past and retained a higher BP from that therapy? This is one of articles I've had saved because it explains pretty well why IV therapy works so well with Dysautonomia patients: Scroll towards bottom http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/

Raisin, I also am on propanalol. I great deal of it actually.. .. (Has to be short acting version, not LA) The propanalol doesn't do much for the BP, but taken w/ other meds it lowers my HR. Midodrine & Ativan. I also take clonidine.. my doses are played with so frequently. I can't be off of it because my surges are unbearable, and it does help my BP now. I've been on it for years. now my body can quickly become pretty "dose dependent" on it and If I try to lower the doses too much, too quickly, I get rebound hypertension. Anyway - right now the doses are 0.2 4x per day & PRN when my systolic rises above 180. I'm on Verapamil as well, it's a BP med that's a calcium channel blocker. I was put on it for the Superventricular tachycardia and it helps with my Raynoids. 240mg throughout the day. Best of luck! -Sarah

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So glad you are doing stable! Thats great news.. My biggest problem is until I leave. My poor fiance.. he suffers such a great deal. The hardest part is not being able to recall major things before I have a seizure, I have not one warning sign. We met with my epileptologist and he asked when my last seizure was and I thought it had been a week previous, turns out I couldn't recall having one in the car a few days prior coming back from dinner with our friends. I didnt even remember dinner. So bizzare. Anyway, I had just gotten done telling the doctor I wasnt depressed and then I flew into tears. I told him to blame it on the Keppra Keep Well!!

Hi DeGenesis, Thanks for your reply. I actually dont have a TBI. (from what I've been told anyway) The Lacune seems to be the least of my problems at this point. I was diagnosed with Generalized convulsive Epilepsy. I still have seizures but they are no longer grand mal as they were before Keppra. Even though the Keppra doesnt completely take away the seizures, the episodes are less intense. Pre-Keppra I was in the process of being intibated before I suddenly came out of it. My seizures now consist of staring spells, "floor drops", memory loss pre and post seizures, sometimes I cry and others I yell. I shake and my fists clench up, along with the rest of my body. They are much worse for others who witness them as I don't remember anything. I now take Keppra 3,000mg and Valium 40mg. I have positive EEG's, w/ 30 minute and 24 hour monitoring. I am scheduled at an Epilepsy Monitoring Center at the end of June. My greatest side effect from keppra is the loss of balance and coordination issues, as well as the psychological side effects. Since I've been on the Keppra for so long those have subsided.. crying spells, needing to be alone. I was tried on Tripletal and Lyrica which were just awful and completely the wrong types of medications. I was then tried on Zonegren but had to stop as 3-4 weeks after I ended up having a pretty nasty allergic reaction. I now know I'm allergic to sulfa drugs.. cipro, bactrim, and zonegron.. etc. So sorry to hear about all youve gone through. Good luck with everything, hopefully we will both have better news in the near future. Thanks for the advice on meds, I will bring up to the doctors when I am admitted Sarah

Pjlmom, Hoping this message finds you with some new answers that have helped to improve your struggles. How did Mayo go? I'm so hoping they were able to provide you with some hope and new treatments. Sarah

I can't believe I didnt respond to your posts Gjenson and Jan, sorry.. Thanks for the kind words. I have been basically keeping a low profile.. gjenson, I still try to come on and read about how you all are doing. Sometimes I have to read the same post 3 times outloud so i can understand them. I'm going to blame it on the medications, but this has been something that has been going on for qutie some time. How are you doing? Fingers crossed that your making steps forward, this is such a long and hard journey we've all been given. Jan -- you always have useful information for me. I know you knew how much hope I put into this appointment and that you were just as happy as I was with the results. You are a rock in the lives of those who are lucky enough to be a part of your world.

Hi goawaypots, this really bothers me. I'm hoping as of today you've finally heard back from them. Do they offer another number to reach the doctor "after hours"? Is this a pattern of theirs?

Hi Rachel! Hope you and Tyler are having a nice start to Spring. Hopefully you have summer's off so you can relax (just a little :-) Thanks for the support. Can I ask why you think this might be leading up to a cause or even symptom of the pots? My gut told me it was because of the tachy and palpatations that can cause this sort of acute attack. The doctors don't use the word stroke, which confuses me. Hoping to get some answers w/ this specialist, he specializes in seizures and will only see you after unsuccessfull attempts with local neuro's, positive eeg's and 2 anti-convulsants that were unsuccessful. Hoping you have better news! Sarah

PJ, your story sounds so similar to mine. Do you mind if I ask around what age you had presented with seizures? I've suffered through brutal migraines for almost 9 years and have tried everything to help.. botox, trigger points, nerve blocks, medications, (prevenative - abortive - and rescue) as well as chiropractic trmts, accupuncture and massage therapy. i've been to the CC clinic amongst tons of other neurologists' who cannot help. Up until this last MRI nothing has ever really shown up on one. The cat scan they recently did after the first two seizures showed white matter, or calcium deposits, which are attributed to having migraine's w/ aura if presented at my age (28) or more commonly seen in MRI of those in later 60's I wish you the absolute best of luck at your upcoming appointment. Please feel free to PM if anything is too personal.. Have you been diagnsed with POTS? Your migraines sound identical -- pain is always severe on the left side, but behind both eyes, slurred speech, loss/blurred vision, misplacing of words, memory loss, and pain that cannot ever really be described. Best of luck to you at Mayo! Sounds as though you'll be in good hands and have adequate care where you are locally. I dont know what I would do without my doctors here, they've been so wonderful. Take care, Sarah

Hi Katherine, Thanks for the supoprt. It's nice to feel like you've got support and people in your corner, especially when they can relate to complex and rare medicial issues. I hope you are doing well. Arizona girl, Do you know the name of the Seizure Med your friends daughter is taking? I am on 3,000mg of Keppra and 40mg of Valium. I have tried Trileptal but it lowered my sodium levels too drastically and increased the pots symptoms, and also tried Zonegran, which was somewhat helpful until i developed early stages of Steven Johnsons Rash/Syndrome. Luckily it was caught early enough and we could treat it with IV Prednisone, benadryl and fluids. I also took Zyrtek and oral benadryl. I'll be so glad when this mess is behind me. I'm waiting until the 29th when I see the epileptologist to decide to add Lyrica or put it in reserve. I took a 75mg dose and felt terrible on it. However, if they believe the benefits can outweigh the risks and side effects I will truly give it my best shot. I honestly just want my life back.. I can no longer drive, work, go near water, and have to avoid stairs and heights at all costs. Luckily, I don't remember the seizures at all, but to witness them I've heard is pretty intense. They are somewhat curbed and less symptomatic on the seizure meds, thankfully! Thanks for the encouragement..