SarahA33

Hi Blue, i wish I knew what to say to make you feel better about this... what a shame all that anticipation and effort you put into your grandson's party didn't work out. I'm sorry. I have a family party again today and I feel like dirt. Nobody realizes how hard it is to do "normal" things and not be exhausuted or bedridden for a few days after. It's easy for my family to look at me and think sometimes, "She doesnt look sick". That famous old saying. I know they mean it as a compliment but it infuriates me. I don;t remember if you mentioned before how long you've been diagnosed? Your kids are very lucky to have you, and they know that. But,not it's time for you to take care of yourself. I can tell you seem like a good person who puts others first.. I remember when my doctor pulled me out of work he said, "Something has to give, and I won't let it be you" He was right. I've been sick since i've been 20 and struggle like we all do. I try to distract myself but it's easier said than done. Your husband sounds similar to my fiance. It's hard for them to feel helpless and to see you so sick. There's nothing they can do to fix the problems and the problems that we have are rare and misunderstood. Has he attended any of your doctor appointments with you? Maybe that might help him undersstand how sick you are. Hang in there and know that you aren't alone.. - Sarah

Blue, I'm sorry your going through this. I think most of us can relate to some degree. I realize what a challenge it is to just get through the day (and night) and then to repeat the next day all over again. I tend to not talk to my close friends and relatives about things because I fear they'll mistake it as complaining, which I'm not. I'm being honest. I have made very good friends with POTS that I don't have to worry about that with. They understand me better than people that have known me for 20+ years. My fiance tries his best but gets frustrated quite often even if doesnt admit it al the time. I get the eye roll or the sigh or the "are you kidding me?" or my personal favorite one that sets me of "Maybe if you came to work out with me you'd have more energy" It's hard for those who havent gone through this to realize how hard it is for us. I'm here to talk if you'd like. Just remember we all just do the best that we can. Hope your party went well and you are feeling better. Sarah

Congratulations Gjenson! Quite an accomplishment! Wishing you continued improvement in the near future Sarah

Goshi, It sounds like you are in good hands. I'm glad they are trying new therapies for you. Hang in there with the Florinef, it's a steroid so it took its toll in the beginning on me. Also, I experienced an inital worsening of migraine and raised diastolic pressures. Best of luck to you through this journey, I hope you find answers and peace with your symptoms. Take care, Sarah

Ana, Has your doctor suggested PRN benzodiazepines like Ativan or Klonopin when your heart rate spikes like that?

Thanks Rachel and Corina, Thanks for the support. I always appreciate it

Hello! thanks for checking in, Raisin.. Hope you and everyone else are doing well.. Thanks for the prayers, belle,blue, achel I'm in the process of going off of midodrine.. I feel awful. It made such a huge difference in the way I felt, but it's been recently thrown out there more seriously that it could be possibly causing my seizures. None of my doctors have seen a case like this before (I'd be so rich if I had a $1 for every time I've heard that), but it's a strong suspicion, especially for the two doctors who put me on it to begin with. Who knows, I'm disgusted and frustrated today. It's all very confusing to me. Going off the midrodine has caused my migraines to get so much worse, which is strange considering one of the main side effects of it is migraine headaches. It's also caused my heart rate to go 20-30 points higher.. I am packing and getting ready for the next admission Monday morning, trying to find whatever is left in me to keep pushing forward. Take really good care of yourself. Hope you are having a good day!

That's so great! What a humorous spin you've put on that. Mine would say "Managed to avoid the ER!" "I actually slept 2 hours straight!" "Graduated to the best doctor in town" or another good one, "My friends really are smarter than yours" Good post. Made me laugh.. I'll continue to think on some sign puns lol

I'm sure there is a ton of posts regarding this, but how many of ya'll have had pretty terrible experiences of mono/throat infections or virius'? And if you did have chicken pox, or mono too, that you can still test positive for haveing epstein barr virus? I wonder if there was a poll on dinet done a while ago, Trying to look for it or something similar. I had mono when I was 16, I missed my first 3 months of school and was sick for the next year.

Katie, I don't know how much this helps but I'm 28 and have unbelievably painful migraines and had strep throat 2 last year. No tonsils or adnoid removals, but I also get sinus infections and lose my voice quite frequently... They were actually thinking about sending me to an ENT before all the Epilepsy stuff started a while back. Think it's worth it? The more I think and read about it I come closer to a conclusion of seeing an allergist. How are you feeling? Hope that you are taking good care of yourself!

Kim, regarding the bowel obstruction your friend had, I came pretty close also until my doctor started me on miralax. Sometimes if that doesn't work I buy the little glass bottle of magnesium citrate. Two bottles will do the trick. thanks for sharing her story. She's been through a lot also. I was checked for a chiari..how was she checked for overactivethyroid" be?

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Pumpkin, Sad. It helps if I have to go in for fluids for my doctors to call the hospital thry have priveleges at and call in a med/ treatment request. Hope you doing better since your last trip to ER. ~Sarah

Rachel, That's so great! You are correct, teaching hospitals are where we need to focus, and also ER's. Most doctors won't see patients as complicated as some us in their careers, so for them to get to listen and ask questions, its a huge teaching experience for them. A lot more productive then reading a excerpt from a chapter in a medical book.

Rachel, Forigve me, but what is PEX? I used to work for an insurance co. and they offer somethign called peer-to-peer. It's where your doctor calls a physician from your insurance company and explains how medically necessary it is. My old neuro used to do that for all of of my testing and it all got approved.. i mean like same day mri's Hopefuly your insurance will offer something of the sort. I have Blue Cross/Blue Cross

*Heads up: I was taking a nausea medication called Compazine for the migraines. 1 pills 3x a day. My epilepepsy specialist told me to throw it out and anything else RXed for Nausea. Apparently if you already have a low threshold for seizures this can actually increase seizure activity. His suggestion was toast..which I'm way passed toast. Then he mentioned something his wife took when she was pregnant called Emetrol.. its OTC, grape and cherry flavor. I do really well with it. So glad you that you had a good time at the park! Hopefully your 4th of July was peaceful.. i think thats what we all want, peace. nice to hear you had a nice time, becia. Did you have fried dough? thats my weakness. I'm sick 3 days later but i JUST LOVE it

DeGenesis and Rachel, That was the best article. So easy to read and understand. .

Bellgirl and Blue, I've tried a lot of treatments for migraine, Botox (but like yourself Blue, I would try it again.) It didn't help with the frequency of them but it did help with the intensity of them at times. It all depends on a lot of things -- stress (HUGE stresser),weather- The heat just bothers me, I get weak, confused, dizzy. I hate it. As for past treatments for migraine: steroid injections in the neck (im assumining the same one belle mentioned cause i cant remember the name, shocking.) Trigger point through the forehad, cheekbones,tip of the neck down to the end of my back , botox, trigemenal nerve blocks, occiptal nerve blocks. Not much left me.

I'm not able to take triptans because they affect my cardiovascular system so much.. chest pain, rash, BP spikes.. not fun. The sad thing is that the Nasal spray Imitrex helped the migraine. I cannot believe they havent suggested any long term epilepsy monitoring. Maybe that could really help you? Atleast they could try to pin point where they are coming from and make the best medication plan to control them. Take a quick look at this if you are able to, just for some info about what they can do with inpatient monitoring.. http://urmc.rochester.edu/strong-epilepsy-center/ Sounds like you'll have fun Thursday! Just a few more days to go... Hopefully you can take a cooler packed with fluids so you don't spend a fortune there, lol. take really good care of yourself, Sarah

I did have the problem with my pressures initially spiking supine. I just looked back in my notes and it ranged from 30-123 points systolic over about a 2-4 week period.. Midodrine is pretty powerful stuff. Plus if you are already experiencing pressures of 170/110, you can't afford spiking even higher, however short acting it is. Another suggestion is to try to take it maybe 10-15 minutes before getting out of bed in the morning. That works really well for me

While you were in Cleveland did they do a long term inpatient monitoring video EEG? They have an epilesy division dont they? Curious to see what your pots doc's say about your seizures.. do they think they are related? My doctors don't feel the POTS and Seizures are related. I understand not physically being able to do this for much longer also. It's so difficult, I never saw this one coming. I'm sorry your SS is taking so long, that's crazy. I know some cases take a long time, but with all that you have going on it should be approved. I'll keep you in my thoughts and hope that the process speeds up for you. Hang in there, every day I tell myself "This too shall pass", even if I know it's only for 5 minutes or 5 hours..(it always comes back, but it passes momentarily ) I'm always here to listen Sarah

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Becia, I hope you catch a break with the IV's. I often check into your posts to see how you are progressing. It's great that the port has helped and that you were willing to go through the pain and hesitation to get to your end result. Sounds like you are on the right path and surrounding yourself with doctors who want to help you a great deal. This isnt related to your original post here, but I was wondering how you are doing with your seizures now that your IV saline has started. They Dx'ed me with Generalized Convulsive Epilepsy but are also thinking migralepsy also. Have fun at your amusement park and take it easy! Small breaks in the shade! Also -- hoping the meeting you had went well for your insurance. Sarah

It's nice to not be the one educating doctor's for a change, however, that doesn't stop me. I'll talk to whatever doctor I can that will listen to me. There's nothing worse than a stubborn who is dismissive

Hi, FriedBrain, Thanks for sharing your story, I'm so sorry you've had to go through all of that. I often wonder myself if they'll ever really figure out what's causing my seizures, 1/3 of those with Epilepsy never find out. Percentages aren't in my favor..clearly. Right now the generalized convulsive epilepsy is the diagnosis. I just don't get it at my age. BTW - I also was compared to an elderly person (someone in their late 70's to be exact) because of the CT showing White Matter/Calcium deposits. (The same thing happend though when I had my stress test..isnt that depressing!) I was assured it is seen in those later in life but also those who are younger who experience migraines. I've had chronic migraines for years so i'm guessing that's what It's related to. I've been tested for MS in the beginning when the migraines started, and the spinal tap ruled that out. Degenesis, Thanks for checking in. I appreciate it..My long term inpatient monitoring got post poned until June 30th because of ear infection and fever. I have to finish my antibiodic before the testing begins. I was so bummed... I wanted nothing more than to get this over with and hopefully find some answers. I wish I had better news.. Blue, Sorry to hear of the migraines. Arent they just awful? The problem with trying to explain the pain to a doctor who doesn't specialize in migraines feels almost impossible because you can't see the disease nor is there really diagnostic or testing tools. I have to agree with you, once the white matter was explained it actually made me want to send the report to doctor's from years ago who blew me off or doubted me. Thank you everyone for your support!!