Intorduction- My History And Possible Pots -Long

[Kerri Reid]

Hello,

My name is Kerri. I am sorry this is long and possibly confusing. I kept thinking of things to add in! LOL I am curious as to wether I might have POTS or something like it. Here is my story. I was born at 25 weeks, a preemie weighing one pound seven ounces. I had heart surgery (a PDA ligation) when I was ten days old. Complications from that inlcuded a cut nerve that paralyzed my vocal chord and caused swallowing difficulties. I also am blind due to Retina Opathy of Preematurity.

As a baby and young child I had periods of brachardia, (where you stop breathing) and did have to be rushed to the hospital several times. I also had several febrile (fever) seizures until the age of six and a loss of oxygen with those seizures.

I lead a pretty normal life graduated from college and worked and competievly figure skated. I was diagnosed with asthma (atypical) in the early nineties and received allergy shots. In seventh grade I was gettting almost constant sinus infections and that often came along with Dyspnea (shortness of breath) In 2002 I was diagnosed with Epilepsy ( secondary generalized Partail seizures)

Then everything fell completely apart in 2004. I caught a cold the summer of 2004 and it did not go away. It flaired up my asthma which is not unusual for me when I am sick. I was having dyspnea and difficulties swallowing and I was FREEZING all the time! ( I didn't have the best medical care at the start and spent a lot of time going to the ER for neb treatments that actually didn't fix me) I was having so much trouble with the dypsnea that swallowing became almost impossible and I went from 136 pounds in June to 98 in September of that year.

I finally got admitted to the hospital in September because the resperologist thought I might have had MS as he did a test on my reflexes and I did not have normal reflex response (since then all of my reflex tests have been within normal limits.)

I was also VERY VERY fatigued and slept a LOT. I tried really hard to eat when I was at the hosptial but it just wasn't

working. I would fall asleep after an hour of having my food. The docs put in a G tube (gastrostomy tube) for my nutrition needs. I was also haveing difficulty walking, weak msucles shaky legs and balance issues. (oh and in highschool I had a vestibular disorder that included calcium deposits in my innter ears) So I spent four months in the hospital in 2004 and lost the ability to eat orally, walk, and had TONS of new seizures. I was diagnosed with conversion disorder.

However, unlike most people I have met with conversion disorder, I have never had a remmission in my symptoms. My swallowing issues remain, so now I have both a g tube and a j tube (jejunostomy) and I cant' walk and have used a wheelchair for the last seven years. I use oxygen at night becuase my pulse ox drops into the sixties or lower for five minutes at a time. (I had an overnight pulse oximitry study not a sleep study) They say my seizures are ALL psychogenic as they haven't caught any on extended video EEG's. I still think some of them are epileptic as I feel better on meds like trileptal. and have less seizures. My blood preassure tipically runs low in the one hundreds over seventies is high for me, normal is eighties over fifties and after a seizure it has been in the eighties over fourties. My heart rate runs frot he ninties up to the onehundreds. This morning my heart rate was 104 and my blood preassure was 90/60 after eight ounces of water and medications.

I do have dizziness if I transfer too fast, or as an example, I had a barrium study done on a tilt table and they had to go really slow with tilting the table back up from laying position (for half an hour) because I was getting dizzy and every morning I have to sit up slowly because I get dizzy from laying down. I have also had chest pain in the hospital which they have always said is muscle pain and that my EKG's are normal. They do those quick thirty second ones. But There have been three times where I have had seizures and my heart rate has been into the 250's during the seizure and high after it comes back down. Sitting my heart rate is usually in the nineties, but sometimes it is higher if I havent' taken my clonazepam.

I realize completley that all of these symptoms could be a mixture of things. I have also been diagnosed with clinical depression with psychosis, OCD personality disorder, anxiety disorder and PTSD. So I do totally accept the diagnosis of conversion disorder, but as POTS kinda fits me I am wondering if this could be the case. I live in Colorado and there doesn't appear to be an autonomic specialist here. I am planning to bring this possibility up with my doctor next time I go in. I also have had two three month periods of having to use a foley catheter because of neurogenic bladder. I also have dry eyes, although that could be related to my other eye stuff. Oh and I forgot things like showering, and shopping are VERY fatiguing for me. I just took a shower about two hours ago and I feel like it is midnight!

Of course over the years I have had many tests, including barrium swallow studies, EEG's EKG's, an EMG, vochal chord tests, sugar fasting, (i do lean towards lower blood sugars and have had three or four episodes of fainting in my life, some due to heat some unexplained)

pulmanary function tests, CT scans, MRI's (of my head) x rays (I aslo have osteopenia) nuclear lung tests, overnight pulse ox studies, ect.

I know you aren't doctors, but could this be POTS? Or is it probably still a mix of stuff? And is it Ok to stick around even if I don't have a diagnosis of POTS since the symptoms are very simmular? Thanks for a ny responses!

Kerri

tubefed since 2004

[RockiesGirl]

Glad you found us Sorry to hear that you have been through so much. I too live in CO and am going to see what has been told to me as the only Automomic Specialist in CO. If you want some info., I would be happy to supply. But please know that my appt. is in 9 days after 3 months of waiting ;o) so I have no opinions yet.

[Kerri Reid]

Specialists alwasy take a long time to get into! I am not surprised you hawaited three months. I would be interested in your doctor information! This seemslike a very good forum. I have been peaking around a bit! I hope I replied the right way, I read the insttructions and I ope I picked the right reply button!

Yeah when you write out your whole medcial history it does look like a lot! I am excited that you have an apointment coming up! Are they going to do just a consult or some testing too? like the tilt table test?

Kerri

tubefed since 2004