New Member - My Story

[Krista3]

Hi Everyone,

I was just diagnosed with Hyperadergenic POTS on Friday. I'm here for support and guidance as I am having a really hard time right now. I wanted to tell my story and if anyone can offer any thoughts, input or advice it would be greatly appreciated.

I have been suffering from an array of different symptoms for quite a few years. Extreme fatigue, severe headaches/migraines, dizziness/lightheadedness feeling like I am going to pass out here and there, brain fog, confusion, memory problems, pain in my neck, severe tachycardia/palpitations, shortness of breath, chest pain, facial and neck swelling and pain, pain in throat, insomnia or trouble sleeping, waking up in the middle of the night with racing heart beat and a panic feeling, etc. I'm sure I am leaving things out but the list tends to get too long as you all can relate to.

Before the POTS diagnosis, I went to multiple doctors, specialists, ER visits, CT Scans/tests, you name it... they were all pretty dismissive and said it was anxiety. Finally I came across Eagle Syndrome (Which is extremely rare). I self diagnosed myself... I went back to my ENT made him look at a previous CT Scan and he confirmed what I had. I was referred to a Head and Neck Surgeon and had surgery on my left side in December of 2014. I have Eagle Syndrome bilaterally and surgery doesn't always fix everything. The reason I am mentioning the ES is because a lot of the symptoms can go along with POTS symptoms.

After surgery some of my symptoms went away but not completely. Within the last 2 months it seems that all of my symptoms have returned x100. I have also started experiencing some new symptoms/episodes along with all of my other symptoms. My face will start to flush, it feels hot and almost like it is burning. The the tachycardia will come on even stronger. I get extremely dizzy/lightheaded and feel like I'm going to pass out. Nausea and pain in stomach. My legs go weak I cannot walk. I can barely get words out and then get extra shaky. These episodes sometimes last up to an hour.

My symptoms have become so bad that I can barely sit up or stand without have them come on. I haven't been able to work or really do much of anything. It is terrifying. Especially when you don't know what is causing it. For the last 3 weeks I have again been to the ER multiple times, specialists and test after test.

I am so relieved to have had the tilt table test give my diagnosis of POTS on Friday. I hope my doctor is knowledgeable and gets me on the right treatment plan as I know how difficult this can be to treat and deal with.

I am so grateful to have found this site and all of the information I have gathered from it so far. If anyone can share their story, experience or anything it all I would love to hear. Thank you all for letting me vent and tell me story. I truly appreciate it!

Krista

[Kkb1216]

Just wanted to say welcome. I'm so sorry you've been so ill, but I've found this forum quite helpful.

Many of us have see tons of doctors, done a bazillion tests, and it's not until a tilt table that we feel vindicated and a little less crazy.

Vent away. Everyone here understands.

-K

[Krista3]

Thank you so much K!

[lfreem02]

Welcome. I am Hyperadrenic, and have found that cutting all caffeine out of my diet has helped. Unfortunately it includes cutting out chocolate. I have been taking Atenolol, Klonopin, and Zoloft, which has also helped. I add salt liberally, but I have to be careful not to eat too much. I also drink three liters of water with NUUN All Day tablets every day. I exercise 30 minutes a day, five days a week. I do it at night so that I can take a shower and go to bed. After three years of dealing with it, I am not symptom free, but I can drive and work. It takes a lot of patients.

[Krista3]

Thank you for the reply and all of the information. I am also being careful with salt. What kind of exercises are you doing or what did you start with?

[Katybug]

Hi Krista,

Welcome! I had to look up Eagle Syndrome. That's a new one. One thing I read said that it can cause compression of the carotid artery. Have they ruled that out as issues with blood flow through the carotid can cause similar symptoms as pots?

Regardless, these symptoms are no fun. I don't know where your located but I see a neurosurgeon who is amazing and sought after internationally. If you would want a second opinion and can get to the Baltimore /DC area, I would highly recommend him.

Have you explored the possibilities of Ehlers Danlos Syndrome or Mast Cell Activation Syndrome? They are both suspected root causes of some people's dysautonomia. Gotta go, doctor just called me into office.

[Krista3]

Hi Katybug,

Yes my left styloid was positioned on an extreme angle sticking into my throat compressing the carotid and jugular along with other nerves. My fear was that my surgeon did not remove enough. Coincidentally my surgeon has been out on medical leave for the last couple of months and there aren't really any other knowledgeable ES doctors in the area. I have sent all of my records to a doctor out of state. I'm just waiting to hear back. This was all before the POTS diagnosis on Friday.

I have started reading a little on EDS and MCA I'm not sure who to see for the MCA. I feel like I am definitely suffering from that as well due to these awful flushing episodes I get along with the other symptoms. I'm hoping to continue to learn and educate myself.

Thank you for writing to me! I truly appreciate it!

Krista

Hi Krista,

Welcome! I had to look up Eagle Syndrome. That's a new one. One thing I read said that it can cause compression of the carotid artery. Have they ruled that out as issues with blood flow through the carotid can cause similar symptoms as pots?

Regardless, these symptoms are no fun. I don't know where your located but I see a neurosurgeon who is amazing and sought after internationally. If you would want a second opinion and can get to the Baltimore /DC area, I would highly recommend him.

Have you explored the possibilities of Ehlers Danlos Syndrome or Mast Cell Activation Syndrome? They are both suspected root causes of some people's dysautonomia. Gotta go, doctor just called me into office.

[Katybug]

In between appts....

Mcas is usually dealt with by an immunologist or hematologist.

[Krista3]

That's what I thought. Thank you for getting back to me!

In between appts....

Mcas is usually dealt with by an immunologist or hematologist.

[E Soskis]

Bless You! You have been through a lot - we can all relate and empathize with you. Hope you find comfort with this site - it helps to know you are not alone

[Krista3]

I am finding a lot of comfort knowing I am not alone. Thank you so much for your post!

Bless You! You have been through a lot - we can all relate and empathize with you. Hope you find comfort with this site - it helps to know you are not alone

[lfreem02]

Qigong helped me get some strength in my legs. I then started walking in the shallow end of the pool. I had to be careful, because I got dizzy at times. Eventually I could jog in the pool. Then I started walking in our neighborhood, and then worked up to jogging. After three years, I am able to do a 30 minute group boot camp class. Everyone can work at their own pace, which really helps.

[SarahA33]

Krista,

Hi there! Welcome to DINET! You've been down a pretty long and windy road, sorry to read all that. Hopefully relief is in sight!! .. I wanted to let you know that our stories are pretty similar (except for the Eagle Syndrome) -- that I'm going to look up in the next few days!

I have hyper POTS/migraines/dizziness that was just dx'ed as migraine induced vertigo/flushing--related to the high #'s of catecholamine's. Migraines for almost 10 years that are so brutal.. I receive migraine treatments in the immediate cares and ER's for them and receive Botox. I wish I could write more tonight but Im having a really bad headache right now, however, I will send a PM tomorrow.

I just wanted to say hi really quick tonight and welcome you to the forum.... I've got a really great POTS team at the Cleveland Clinic, do you have an autonomic neuro or aboard certified migraine headache doc? Was wondering if youd gone through the autonomic testing yet or not.

Hopefully we can chat soon, again, welcome to DINET!
Sarah

Heres a link to find a board certified headache medicine doctor in your area if your interested -- http://www.ucns.org/go/subspecialty/diplomates

[Psalm 23]

Hi Krista and welcome to the forum. I'm sorry you have been through so much. It's unfortunate that we have to be subjected to so many tests, misdiagnosis and such scrutiny to finally arrive at the correct diagnosis or diagnoses. With so many other co-existing conditions a Hyperpots diagnosis may very well just be the beginning especially since EDS/HM and MCAS many times go along with that diagnosis. Like you I was referred from doctor to doctor to doctor as I continued to accumulate symptoms and eventually ended up unable to work. It took me quite a while to find a doctor who was able to correctly diagnose and treat me. I am still considered a " work in progress " though. I'm so glad you now have a direction in which to move forward with.

Janet

[Krista3]

That is wonderful how far you have come! I've been told swimming can be really good for POTS. I want to speak with my doctor and see if there is a PT place that works with people who have dyautonomia. I feel like being at s regular pool with a bunch of people and noise would be too much for me right now. I hope I can have the results you have had!

Qigong helped me get some strength in my legs. I then started walking in the shallow end of the pool. I had to be careful, because I got dizzy at times. Eventually I could jog in the pool. Then I started walking in our neighborhood, and then worked up to jogging. After three years, I am able to do a 30 minute group boot camp class. Everyone can work at their own pace, which really helps.

[Krista3]

Hi Sarah,

Thank you for the warm welcome!

I would love to talk to you more about your experiences and the clinic you go to. You can PM me whenever you have some free time.

Right now I am just seeing a Cardio Electro Physiologist. They are referring me to the Duke Syncope and Dysautonomia Clinic but I cannot get in until late June. I think as far as dysautonomia goes I've only had the tilt table test. Maybe you can share in a PM in more detail what they've done at your clinic. I am willing to travel if need be.

I am going to look at the link you sent me. As far as my migraines go, I just see a Neurologist right now. I moved from New York to North Carolina about a year and a half ago so I didn't have a Neuro out here until recently. I am also in the process of going to a Neuro Interventional Radiologist to check for IH (Intracranial Hypertension). She is supposed to be excellent for headaches/migraines. We shall see. Have you ever been evaluated for IH?

I hope your headache calmed down from the other day and look forward to hearing from you soon!

Thank you for reaching out! I really appreciate it!

Krista

Krista,

Hi there! Welcome to DINET! You've been down a pretty long and windy road, sorry to read all that. Hopefully relief is in sight!! .. I wanted to let you know that our stories are pretty similar (except for the Eagle Syndrome) -- that I'm going to look up in the next few days!

I have hyper POTS/migraines/dizziness that was just dx'ed as migraine induced vertigo/flushing--related to the high #'s of catecholamine's. Migraines for almost 10 years that are so brutal.. I receive migraine treatments in the immediate cares and ER's for them and receive Botox. I wish I could write more tonight but Im having a really bad headache right now, however, I will send a PM tomorrow.

I just wanted to say hi really quick tonight and welcome you to the forum.... I've got a really great POTS team at the Cleveland Clinic, do you have an autonomic neuro or aboard certified migraine headache doc? Was wondering if youd gone through the autonomic testing yet or not.

Hopefully we can chat soon, again, welcome to DINET!

Sarah

Heres a link to find a board certified headache medicine doctor in your area if your interested -- http://www.ucns.org/go/subspecialty/diplomates

[Krista3]

Hi Janet,

It is unfortunate how much we all have to go through before getting an answer. I am curious about EDS and MCAD, I wonder if I have something else going on, on top of the other issues. I just don't know who to go to or what doctors to see. I'm sorry to hear about your struggle as well but am happy you are on the right path! I'm hoping the doctor I see is knowledgeable with POTS. I'm also concerned I have MCAD. I want to get a proper disgnoses because I know some medications used to treat POTS can react badly if you have a Mast Cell issue? I think that's what I read.

Hi Krista and welcome to the forum. I'm sorry you have been through so much. It's unfortunate that we have to be subjected to so many tests, misdiagnosis and such scrutiny to finally arrive at the correct diagnosis or diagnoses. With so many other co-existing conditions a Hyperpots diagnosis may very well just be the beginning especially since EDS/HM and MCAS many times go along with that diagnosis. Like you I was referred from doctor to doctor to doctor as I continued to accumulate symptoms and eventually ended up unable to work. It took me quite a while to find a doctor who was able to correctly diagnose and treat me. I am still considered a " work in progress " though. I'm so glad you now have a direction in which to move forward with.

Janet

[Psalm 23]

Hi Krista,

Hopefully the docs you see at Duke are PoTS knowledgeable will also be able to steer you in the direction of a good mast cell doc. I think most consider Dr. Castells and Dr. Akin in Boston and Dr. Afrin who is now in MN to be up there amongst the best. I know there are others. As far as contraindicated mast cells medications go Beta Blockers are probably amongst the most potentially problematic and most commonly ordered for PoTS patients.