beala

Has anyone ever had a spect scan before ? Our son's Dr. would like our son to have one done since his brainfog is so bad.We have not be able to find anything to help..

Laura

My 18 year old son has had pots for 3 and half years now. Now my daugher is showing signs also. For over a year now she has been dizzy upon standing and her standing heart rate is between 120 - 130. We are waiting for some blood work from the Dr. to check for other things.Thyroid etc..... She was negative for Mono but she is ALWAYS tired and never feels rested. I am very worried------ No one in our family seems to have POTS so I guess I and concerned about this. The only way to really find out is the tilt table Right right........................?????

Thanks

Laura

My 18 year old son has pots.There are more women than men who have pots, I remember reading this in one of Dr. Grubb articles. Yes, the brainfog can be awful my son struggles daily with this and we can't seem to find anything that helps-

Our son just started taking licorice root twice a day( 500mg ). Our Dr. didn't know alot about it but is letting us try it. What do most people take and how often ? Can you stay on it long term and do you need your potasisum levels taken ?

Our son's new Cardio suggested we try sudafed 30 mg one a day, so far my son has felt more dizzy and thought he was going to pass out. I know we have only giveen it two days but man when you feel like that after taking it. I would like to stop until we talk to heer again. He does take 100 zoloft and procrit shots. She thought the 100 zoloft was high and thought about decreasing this as a 2nd plan if the sudafed wasn't helping with the brain fog.

Has anyone had luck with sudafed ??

wishing you all the best, and i can understand your worries, i worry alot too!

radha

<{POST_SNAPBACK}>

Yes good thoughts are sent your way- we can never have too many!

Laura

I have always been interested in this CoQ10 since reading an article on brain fog.

http://home.tampabay.rr.com/lymecfs/brainfog.htm This Dr. says that CoQ10 helps brain fog and have always wanted my son to try it. Have any of you noticed that it helped with your brain fog? He also mentioned that Neurontin was helpful for brain fog also. Anyone try this ?

Laura

Just wondering if anyone has gone to any of these Dr's David G. Bennditt or Scott Sakaguchi in Minnesota? There names came of the this website. They are at Fairview University Medical Center.

Thanks

Laura

Anthony,

Do check out Dynakids my son is 17 and has pots. They have a forum for you to talk to other teens with autonomic dysfunctions .

Best of Luck to you- I know it can be scary

Drink plenty of water and increase your salt until you find out your tests results

Ginnysgirl,

I feel for you and your daughter. My 17 year old son has pots also and has severe brain fog and can't remember much either. He is a senior this year and has been homebound. We tried wellbutrin for the brain fog but it didn't help but it has helped others. Dynakids has a parent forum which might be helpful for you to talk to other parents of teens. Good luck and feel free to e-mail me if you like.

Laura

How much adderall do you take for fatigue and brain fog ??

1. Josh

2. 17

3. POTS

4. 15

5. St. Paul , Minnesota

6. severe brain FOG, ringing in ears, dizziness, fatigue, elevated HR, trouble sleeping

7. hasn't been any- nothing helps him FEEL better

8. high salt, gatorade, midodrine, inderal, metoprolol, mestinon, zoloft, wellbutrin, provigil.

9. nothing so far he is homebound and can't go to school

Blackwolf

Do you think you can drink too much gatoraide ?? My son perfers that because of the sodium in it but now I wonder if the sugar is bad for him. He continues to have brain fog and feel crummy 24/7. ??

that would be fine if you could function. my sons brain fog is so bad he can't go to school andhas trouble remembering which class to go to next. each day the brain fog get worse and worse and they keep telling us to wait. He is a senior in high school and need to graduate. How long can he wait !!!

Anyone have suggestions on stopping on ssri ? Do you really need to decrease over several weeks, or can you go quicker if you already feel so crummy and sick from the med ??

Thanks

Our insurance denied covering the cerefolin. Has anyone else had trouble with this ? I believe we can file an appeal but not sure how to word it. Any suggestions~ Thanks

Has anyone heard of any of these three Dr's. They were on the dinet physicians list as treating pots at Fairview University Medical center U of M, MPLS MN ??

My 17 year old son has pots and has seen Dr. Low at Mayo. He has tried many meds but continues to feel worse each day . Dr. Low said the only other thing he can offer us is trying an ssri, which we are trying zoloft now with no help. I know Dr. Low is a specialist in this field like Dr. Grubb. Do you think Dr. Grubb will have some ideas to help our son ? We have an appt Aug. 10th. ?

Laura

Lorrell

Do you take b-12 shots or vitamins ?

Potsparent,

If you can't use a beta blocker because of side effects what do you use to lower your childs heart rate ?

Laura

potsparent ,

what have you found to help with your child HR then ?

Thanks, I have a e-mail into the dr. but haven't heard back yet~ so I have cut his tabs in half for now~ he was on inderal 10mg 3x a day but his HR was still 120 after 2 and half hours.

Is anyone taking metoprolol, if so how much ? My son just started taking it again 50 mg 3 times a day along with an increase dose of zoloft from 75 to 100mg. We also started him on 20 mg adderall and he is really feeling yucky. He is dizzy upon standing, feels like he is going to faint. He never has felt like he was going to faint .,dizzy, vision problems.I just wonder if he is on to much meds ?

Casey,

That is so nice you have found something that works for you ~ Good Luck with school

Laura

Thanks Deb ! That sure is encourging ~ How long have you been taking zoloft ? How did you long before you went up to 100 mg ?

Laura