POTS

[MrsB777]

My 17 year old daughter was diagnosed with Postural Orthostatic Tachycardia Syndrome a year and a half ago.  She does not pass out.  Heart rate and BP readings inproved with meds, but her symptoms have not improved, except fatigue and nystagmus less severe.  I am wondering what we should be looking for now, and if we just wait or check on other possibilities like Chiari Malformation.  Her symptoms are ? unusual even for POTS - she has CONSTANT headache and dizziness (get worse and better but never go away), severe fatigue, noise sensitivity, nystagmus (better will gabapentin), short term memory problems - and others, less intrusive to daily functioning.  Always feels like something is stuck in her throat.  Always cold.  Tingling extremities, poor balance, chest pain, fibromyalgia, trouble staying asleep, occasional vertigo, . . .

[selmaS]

I also would like to invite u to join us in the chiari forum.....many of the members have had surgery already and willing to share info.
U may also want to look at web sites like chiari people....ASAP....or the chiari institute....Finding the right NS is the utmost priority!

Good luck
Godspeed
"selma"

[beaux122]

does sound like chiari...i'm recently diagnosed and was first diagnosed POTS. this has been a nightmare, but all my other tests have been negative...ms, neuropathy, nerve conduction. my neuro says my symptoms could 100% improve with decompression, but my neurosurgeon may say different, just don't know yet. contact www.chiaricare.com....hope you find help, this is the most agonizing pain i could ever experience and my quality of life is shot....thank God for my children and husband to keep me going! i'll pray doctors have wisdom for your daughter. hopefully by now you already have answers.

[Abhijeet Deshmukh, MD]

Hi.

You are an alert parent. The symptoms do point towards a possibility of a Chiari.
You should in fact check for Chiari malformation. Earlier, the better. There's no harm in doing so.

Is there a change in your daughter's voice ?

You may consult a Neurosurgeon.

All the best

DrAbhijeetMD