[Dejibo]

I have been having horrible headaches. Finally saw the neuro who said I am having "electrical storms" kinda like seizure storms in my brain and put my on topamax for them. Said it would take about a week or so to get used to the lower dose, and then start taking a full dose. He worried about some of my symptoms and wanted me to call in a week to let him know how I am doing or call back if things got worse. Well things got worse!

I feel buzzy, strange, and like I am on the verge of passing out. my heart is racy, and I feel odd, and off. when I rest, and lay down I can get things to calm down, but when I get up and popping it comes on strong. The MD was worried that this electrical thing can affect the pace of my heart and wants me on a halter monitor and to see a cardio pronto, but none have called. I feel weak, out of sorts. I called yesterday at 11am! and called back at 2pm. I explained to the nurse (not the answering machine) what my sx are and explained I was upset and expected a call. she said she understood and the MD has my file, and WILL call me TODAY. well, the whole day went by with no call. UGH!

How do you get an MD to call you back?

I spoke to my regular MD who said "stop taking the pills. but the neuro guy told me how important it was to stay on them when he gave them to me. I have had this headache for 2 months. I NEED to break this cycle. Im stuck in the middle!

[Dejibo]

As I hit reply his office called to say "this is not too abnormal for this med, please stay on it, hang in there. you should notice things get better as you get used to the dose. as you bump the dose if things get worse, please let us know. I am scheduled to bump the dose on Friday, I said I wasnt going to do it on the weekend, I would wait for Monday and see how it goes. They said fine. She apologized for not getting back to me last night, and said something about emergencies, but...dang! I felt like going to the ER myself! WTH?? When you have anxiety and someone leaves you hanging it doesnt help!

I hate this stupid disease!

[Dejibo]

at the suggestion of my regular MD I got a BP machine. my BP is 88/52...no wonder I feel buzzy. whadda think?? I think my BP is a bit low.

I called the neuro office to report the low BP and asked that the nurse PUSH the cardio office to please see me faster. She said WOW, no wonder you feel so bad. well...duh!


So, the saga continues. I am going to continue the med, be cautious drink well, and rest alot. I hate this game!

[Kitty]

Wow, Dej, your BP is really low. I think I'd just show up at the cardiologists office and tell them I need to be seen ASAP. I know they'll probably just send you to the ER but at least they'll know you mean business.

[Debbie D]

My first neuro, believing the brain lesions were caused by migraines (which I'd never experienced) put me on Topomax. I found out quickly what a migraine felt like...

Your bp is so low...be careful when standing up...give your body a half minute or so to adjust. Hydrate to keep blood volume high enough. And get that cardiologist a ring and let him know pronto...

[Dejibo]

I would love to call the cardio, but I dont know which one I will be seeing. When I call the cardio office, they tell me they have my name, and # and someone will be calling me soon, but until I am "assigned" a cardio of my own they cannot help me. If I am feeling ill I can always go to the ER and one will be assigned quickly if I am found to have a cardiac condition. I am assured that BP as low as mine is a qualifier. Probably my anxiety will kick in and shoot my BP thru the roof lol. I dont feel in danger. I am happy now that I know what is causing this buzzy feeling, and its calmed my nerves greatly to just have an answer. I have my machine, so if it falls too far I can always take a trip. DH has vowed to not go too far from my side. He has his cell phone on him while he works in the yard, and he comes in every half hour.

I am drinking yummy stuff, and take my time getting up. I pump my legs, and make sure I am steady before I take off walking. I am not driving or operating heavy machinery. as a matter of fact, I think I will lay down and watch smut Tv and see what Dr. Oz and Judge Judy are up to. I dont have children to chase. I dont have to go to work. I dont have appointments to be at, my cat is feeling better, and my only wish is that the weather was nicer. So, all in all, im still blessed.

isnt it funny that just knowing what caused it can be so relieving.

[EddieF]

Dej that's my blood psi too almost always. Sometimes 80's over 40's. I take Prazosin 5x/day to control bp spikes from my C6.5 spinal cord cut. Never slows me down though.
Also take 140mg Baclofen/day which nurses freak when I ask oh..is that alot? I still push a mile & swim almost every day. Doesn't slow "me" down.

Back to post topic- "i'd" call back ever couple hrs if it's important. Squeaky wheel...

[new2net98]

Originally Posted by Dejibo

at the suggestion of my regular MD I got a BP machine. my BP is 88/52...no wonder I feel buzzy. whadda think?? I think my BP is a bit low.

I called the neuro office to report the low BP and asked that the nurse PUSH the cardio office to please see me faster. She said WOW, no wonder you feel so bad. well...duh!


So, the saga continues. I am going to continue the med, be cautious drink well, and rest alot. I hate this game!

You should go to the ER...this is not normal results...it should be monitored. Barring that, go see your Internist...You're right, Cardio will be assigned at ER & will then HAVE to have contact with you. Don't chance having heart issues on top of everything else. Once it stops beating; it's not a cakewalk back.

[Dejibo]

Within an hour of that post got call from the cardio center from "jennifer!" so perky! she said Dr. Long called personally wanted to speak to dr silverstein. They talked for a bit and then they decided that I should either go to the ER or come in Wednesday am. I said I would go Wednesday AM. This way I avoid the alley full of hacking coughing, vomiting, whining folks. I avoid the dance of 100 tests that I dont actually need, and get to slow down and breathe while they find someone who can stick an IV in me if needed. We can slow down, not panic and do this outpatient or if needed get me a bed and skip the petri dish of infestation that is known as the ER.

I am stepping out the door now for my 8:30am appointment. Wish me luck. I took my BP and is 85/54 and my pulse is 95. this outta be fun. awww the joys of MS.

[Blessings2You]

Hope you get some answers. Is your cardio at DHMC?