SarahA33

Hi there, I'll try to make this quick. In the beginning of February I started experiencing tonic clonic seizures and was hospitalized for 4 days. Has anyone else seen this in their MRI or someone elses? So it says... "Patient presents with new onset of grand mal seizures witnessed by Emergency Medical Techinicians and Emergency Dept. Staff" (How embarassing!) "Positive EEG" "Medium sized contusion resulting in concussion" AND..Small lacune in the right pons. (Oh - otherwise unremarkable mri) Lacune.. or a lacunar stroke, am I wrong into thinking that this its ridiculous that my brain fog has significantly increased in the last years especially or that some of the neuro symptoms I present during migraines could have caused this? The migraines have always been termed "stroke like" when witnessed clinically. From what I've been told and have the attention span to listen to, or read on my own, it resulsts typically from a pulsating heart rate caused from HTN (not to mention my resting HR). I've got the dis to bring to the new seizure specialist on the 29th. Can anyone help? Take Care Everyone

Just a quick question, My epileptologist (seizure specialist) is certain he believes Lyrica (as an add on therapy along with an anticonvulsant med - Keppra) would greatly reduce the frequency of the new onset of generalized convulsive epilepsy seizures that I've been having. Anyway, this isnt a question related to an actual Lyrica experience, but I was curious if anyone has had trouble getting it approved through there insurance. I went on their website and printed out the coupoins but it didnt help reduce the cost all that much. Unfortunately, due to the unpredictabily and amount of seizures I am having I am unable to work, so the price of a $140.00 a month for the Lyrica is absolutely impossble. My seizure doc did mention gabapenten but said it wasnt as strong as Lyrica. Did anyone run into this problem? I'd greatly appreciate any tricks ot tips you all used to get it covered. I have blue cross/blue shield insurance. Thanks in advance.. ~ Sarah

Hi Kitt, Thanks for the link. Much appreciated. I hope you are well... Sarah

Hi Jackie, Its been a while since I've said hello, I'm hoping things are going well for you. In regards to the fluid retention, I have the exact same problem. Sometimes I'll get fluids once or twice a ,2 -4 liters each month because my body litterely ***** it up". Like yourself, I won't pee for almost 2 days. It's incredibly frustrating. I do have to agree with Kayjay regarding the V8 or pedialite. At this point i've been able to get away with splitting half gatoraide and half water..

My fiance and i stayed at a hotel, the morning we were getting ready to leave the elevator opened and a poddle came in and layed on my feet. I looked at the owner and she said "He's a service dog. He's trained for SVT and other arthymia's. The entire time while my fiance checked out us, he continued to lay on my feet. I'm thinking of looking into getting an Epilepsy Dog, does anyone have any idea where I would even begin with this?

I can't believe that I found this post. I came on this afternoon to write about almost the exact same thing. Makemeerised -- I'm so incredibly sorry for all of the unfortunate episodes that you've been having. I can identify with you completely. Did you ever have seizures or anything growing up? I didn't. I was diagnosed with hyper pots (w/ extreme high bp's) On February 3rd of this year, I was sitting at my desk, normal day -- (migraine, high hr, but was functionining fine). The next thing I remember is waking up and seeing police officers and EMTs standing at my cube. I had my first grand mal seizure ever. second one at the er an hour later Anyway, I had my 3rd one last week. This is on 1,000mg of a seizure med called keppra. I woke up on the bathroom floor and apparently had been throwing up because I busted my lip and there was blood. The doctor raised my keppra to 3,000mg and I'm barely functionable. I can't stand up because I'm so weak, I'm extremely emotional and anxious, my balance/coordination is way off, brain fog way worse, the list could go on and on. Anyway, since it's been about a week since the increase, the seizure specialist (epileptologist) said side effects should be diminishing shortly and if not we can try a medication called Lyrica. I'm sorry this is as long as a book. I'm so scared. I was doing really well until this happend.. I hate not having any control over anything thats happening. It seems as though I somewhat well, or stable, for a while and then I get smacked with a major setback. I've been researching Reflex Anoxic Seizures, it sounds actually like it could fit. My only question to you guys is if it is Ref. Anox. Seizures would you still have positive EEGs? I have had 3. . I don't know the last result, but the first two were pretty abnormal. The epileptologist said my seizures were tonic clonic from the back lobe areas and created sharp waves. he also suggested migraepilepsy, which he said is extremely rare, but fits in my case pretty well also. Anyone know any other info about these types of seizures? Glad that you guys are here. As of right now, I am taking 3,000 mg of Keppra, Ativan, Clondine,midodrine, propanalol, naproxen. Thanks for any helpful info.

Becia, I'm so sorry to hear of all of your struggles, but it seems you are on the right track. atleast you have been able to find a medical facility that will work with you and listen to your concerns and struggles. I'm so extremely happy to hear you are improving. ... I am wishing the best for you and know that you have all of us, and especially someone in ny! Best, Sarah

I seem to have developed an anxiety when doing something unfamilar or new just because I never know how my body is going to react. The only predictability is unpredictabilty, if that makes any sense. It's not easy. I'm glad you'll be surrounded with close family as that will be one less thing you'll have to worry about. My trip is only for one day. A day packed full of meetings so I'm hoping I can keep it together. I'm sure you know all the tricks to svt trade.. imerssing your face in ice cold water, "gagging" or coughing super hard, holding your breath and bearing down (vasovagal maneuvers).. all sound like tons of fun which do very little for me but when it's happening I would try almsot anything. Even though your episodes are ony ranging around 1 minute, it doesnt take the severity of the fear out of them I'm sure. They're terrifying and immensely difficult to "work through". I can deal with a rather high heart rate but the svt takes it to a whole other level. How high are you ranging from/to? Best of luck to you, Sarah

Jennifer, Hope you are doing well today. I have a meeting in Chicago in about a month that I've been panicing about. Going to be around co-workers and everything so it won't be all that easy to disguise the phyisical and emotional anxiety that comes about. I havent been on a plane in years and years. I think it's a good plan to get "tanked up" with some fluids. However, for the svt have you been on verapamil (calan)? I rarely get episides of it any longer since starting it and was on the ablation road.. how is it going on your end?

Hi! First and foremost.. Congratulations! What a major accomplishment you have coming up! That's so awesome. I wish I had some advice for you, all I can tell you is that you seem incredibly strong and driven and I'm sure you will come up with an idea that works best for you. I'm keeping my fingers crossed your meeting goes well on Tuesday and that they'll be helpful. Like you said, there isn't a reason they shouldnt be. Here's a thought (that I'm sure you've already thought of..) how about some iv fluids that morning? And this always helps me when I'm sitting.. I cross my legs and then switch every 15-20 minutes. Seems to help me with the pooling somewhat. I know thats just a really small bandaid though. Let us know how it goes! Sarah

Hi Rachel, Sorry to hear about the migraine spell but atleast the med's have helped this time! Was Maxalt ever tried with you also? Before my blood pressure's became so high, I used frova or maxalt, those were the only 2 triptans out of 7 total that had ever worked. You brought up a really good question about the serotonin levels in dysautonomia patients. We do know that another neurotransmitter is norepinephrine, and having pots our levels are naturally higher also. I'd be curious to see if any if Vandy or Mayo is doing any testing in that area currently for research purposes? I forgot to respond to the portion in your post about wondering if mood stabilization from a higher serotonin production is possible... I feel so strongly that it has so much to do with it. I have peaks of frustration and hopelessness but I can pretty quickly get out of those spells. What's interesting is that I have a lack of patience, but never seem to get angry or really depressed. I do get overwhelmed and feel somewhat lost, but clearly I think we are all entiltled to feel like that some days. Another thing that interests me about serotonin is that is is believed to be one of the neurotransmitters that is responsible for anxiety, mood's, pain and sleep. Typically the lower your serotonin is, the more pain you feel, and the less sleep you get. I'm the total opposite - high levels of serotonin but am never tired and in pain 5-6/7 days of the week. Another thing, have you had your dopamine checked? Mine is always really low and in some tests has been not detectable. My doctors don't really know what to do with that -- at one point, they were considering trying a parkinson's medication to increase the levels but decided to put it on reserve. Be Well! Sarah

Jackie, This doctor sounds promising! Fingers crossed for you that he'll help you find relief and can lesson your symptoms. I hope you have success on the Mestinon! Hope you are doing well, Sarah

Rachel, I also have really high serotonin levels. I was screened for neuroendocrine tumor, carcinoid I was instructed to avoid certain mood stabilzers and to have it rechecked periodically. So glad to hear your migraines are improving! That's great news. Good luck with everything. Sarah

Hmm.. I also have bc/bs. I'm wondering if this is why my at home IV saline's keep getting denied w/ POTS diagnosis Not good.

Katherine, hope you are feeling well and surviving the storm!! Parts here in buffalo declared state of emergencies and driving bans all over the place. Negative 7 is so much fun. Wind, snow, and whiteout's..oh my! Thank you for the positive thoughts.

I understand what your going through. It's absolutely terrifying. How often have you experienced headaches? Maybe a preventative medication, such as topamax or depakote might be helpful?

Freaked, did they mention migraines at all in the ER? do you get headaches/migraines? Just a thought.. your symptoms you describe --blurry vision, slurred/slowed speech, and brain foggy feeling-- are all things I get during a migraine. Also, the blurred vision for me comes so often.. I see fuzzy spec's and strands that linger throughout the day though. Do you think this could be part of your pots or do you feel it's different? Sorry it brought you to the ER. They are often less than helpful, do you have a neurologist you can follow up with? gjenson asked a good question, how did they rule out this was nothing? Did they have anything to offer?

gjenson, I think acceptance is going to be an on going process for me. Meaning, I don't think I'll ever fully be able to accept that I am going to be dealing with this for "X" amount of years to come. But, I have to stop thinking about it so much, and am learning that I need to not be so hard on myself. I have learned in counseling how to start "catching my thoughts" so to speak, and then remind myself that I'm doing the best that I can. The emotional effects and tole this has taken has been just as challenging as the physical elements.

Janet, Corina and Rachel, Thank you ladies for the encouragement and the support. I hope you are all doing well Rachel, how is Tyler doing?

Yogini, Are you taking any meds that cause your hr to lower? sounds scary.. I've gone low a few times and find myself pacing around to pick it back up. It's horrible to go through that Was your HR irregular when it picked back up? "Shaky" or "quivering" or anything? Sarah

Hi there everyone, I hope you all had a nice new year. The holidays are over which is a relief for me.. A few posts ago I mentioned starting a medication, Verapamil (calan) for the bouts of SVT i was experiencing. It's actually helped and I rarely get episodes of that any longer since starting it.... it's a short acting 3x per day medication for me now. I don't mind the medication as long as the symptoms are under control. I've increased the midodrine and that seems to be helping also. No side effects from the midodrine like when I first started it so that's a plus. I've been able to go 7 weeks now wtithout a trip to the ER for fluids so that is pretty positive. Normal is between 4-6 weeks. I also started a medication called meclazine, typically Rxed for Vertigo, and was given to me to take during the migraines since they cause a great deal of that. I've been starting to add that to my med reg and it seems to be helping a lot.. . I'm trying here guys.. You all have been there for me through some really rough times, so I thought I would update you on how I'm making improvements and doing okay. Im doing the best that I can, which is what all of us do on a daily basis, and trying really hard to figure out how I'm going to fit my pots into the rest of my future. I wish everyone a very happy new year and I hope that this year brings us all some peace and less setbacks. Thinking of you all

Hey Rachel, I had the same panel's ran that Tyler had done, however, mine done a while ago before the migraine pain became unbearable on a daily basis. I had the panel completed by my GI specialist and it came back pretty high the first time and when he repeated it 1 month later it came back within normal ranges. I'm curious to have my doctor run the panel's again to see what they are now that I suffer daily from migraine headaches like Tyler. Thanks for bringing this to attention Your off to Texas! Hopefully you'll get a much deserved and special christmas gift! Hang in there until then Rachel and Tyler!!

Hi guys, Both of my doctors tried writing multiple times. It was in the appeals process and got denied. Bottom line is that my insurance company just won't dish out. I have to dish out, though!

Hi everyone, Anyone have any tips as to how they got their insurance company to cover at home IV Saline infusions? My doctors have been trying for over a year to get it approved for me. It was denied again. At first they wanted to do a liter weekly then resubmitted 2 liters bi-weekly. I don't get it.. Its more expensive for me to go to the ER to get loaded up on fluids. This would completely change my life if I can get it approved. I tried going to an immediate care/urgent care and they refused to me because of my blood pressure. I'm forced to go to the hospital where my doctor's are and it's a nightmare every time. any ideas? Happy Holidays

Kham, I have the opposite problem and have naturally high serotonin numbers w/out medication interactions or med's that would raise it. 5H's and Serum's are always in the 500-800's. I've been ruled out for carcinoid's a few times to say the least. None of this is easy.. It's all very frustrating because every day is a challenge. I'm glad you've got family support - that means so much. You've got support on here, too.