Hi everyone,
I’ve just been diagnosed with POTS on top of the ES. I know that there are a few people on here who have also had this mix. I just wanted to know some of your stories, what helped, what made it worse, experiences with work, etc.
Thank you!
Krista
Hi Krista3, could you describe the symptoms you were feeling regarding POTS? I haven't been diagnosed with POTS but I've read up a lot about it thinking I might have something related to it... I wanted to know what your specific experience is and how it has affected you. I hope you are in good hands, praying for the best!
Hi Beary,
Some of the symptoms are very similar to ES so it is kind of hard to differentiate. I will try though. After my surgery in December for ES I would still experience dizzy spells. I have had a headache/migraine almost every day for as long as I can remember but I started to have this different kind of headache on the left side of my head. It seemed to originate from my temporal area to back behind my eye. I would also get a fluttering feeling in my head. Different from my normal pulsing/beating I would get from the ES. I also had facial pressure, pain and swelling on the left side only. These symptoms got worse and then the dizzy spells started to come on more and more.
One night I was sitting up on my couch reading something and then I could not comprehend what I was reading. I blacked out for a few seconds and then had trouble getting my words out. My boyfriend rushed me to the ER. All came back normal. It was pretty scary. After that the dizziness seemed to be almost constant. I would get these episodes at work where my face would become so hot, feeling like it was burning (the rest of my body would be cold), nothing I would do would cool my face off, then my palpitations/tachycardia would come on even stronger (it was already pretty constant), then I would get extremely dizzy/lightheaded and feel like I was going to pass out. I wouldn't be able to think or concentrate and the episodes would last for up to an hour at times. Once they started to pass I would become cold and shake and shiver pretty hard. My legs would go weak during the episode so I would have a hard time walking. I also would have a hard time talking. Really scary.
Once I had the POTS diagnosis I realized that sitting up with my feet on the ground or standing will bring on the symptoms. As soon as I sit up or stand my heart rate will shoot up and my blood pressure will drop. I have had a history of high blood pressure for the last 5 years and within the last 2 months it has dropped substantially. Which was strange to me but common with POTS. Plus I have an all around feeling of extreme fatigue and just generally not feeling well. It almost feels like the flu, everyday.
At this point I am on a medical leave from work until my doctor has me on a treatment plan for a little while. I can't really do much of anything. After I take a shower I have to lie down for awhile after. Little things around the house I struggle with. Thank God for my wonderful and supportive boyfriend. He helps out a great deal. I can't drive and if I am up walking around for more than 5-10 minutes I get extremely dizzy and feel like I am going to pass out. I tried to go to a store the other day... just the walk from the car to the store took a lot out of me. I barely could look for what I went there for. I had to sit down and couldn't leave for about 15 minutes.
There are a few different types of POTS. I hope this helps. Let me know if you have any more questions.
Thank you for the thoughts and prayers!
Beary said:
Hi Krista3, could you describe the symptoms you were feeling regarding POTS? I haven't been diagnosed with POTS but I've read up a lot about it thinking I might have something related to it... I wanted to know what your specific experience is and how it has affected you. I hope you are in good hands, praying for the best!
Hi Krista, thank you so much for sharing your symptoms and experience. It's tough to hear that you have and are going thru all that, but it's great you have support and I hope things get better for you soon! We all wish for the very best for you.
I can definitely relate to the headaches and pulsatile-like pain from the ES. After the removal of the styloid, I no longer feel those pulsatile headaches. But, I realized that when I stand up after sitting down for a while, my heart rate seems to rise - I tried measuring this as best as I could and it typically goes from 60s/70s to 100 or more. I don't feel like I will faint and don't feel dizzy but do feel the heart beating faster/harder. This is typically worse or more noticeable when I am dehydrated or if I just ate a big meal. I thought maybe it had to do with deconditioning after the surgery (not having moved around or worked out for a long time after the surgery). I think it has gotten better but now and then I still feel the increase in heart rate. Sometimes I will feel like my vision is pulsing. And yes, after showers the heart feels like it's pounding faster - I think this has to do with how the warm water relaxes the vessels in our arms and legs so more blood goes to the extremities... drawing blood away from our core, so the heart beats faster to compensate.
How did they diagnose your POTS? The tilt-table test and all? Are you on any medications to help create some of the symptoms?
You are so welcome! I am happy to help. Thank you so much for what you said 
I wonder if you have a mild case. Typically they measure it by a heart rate jump of 30bpm upon standing. So it definitely could be. My normal heart rate usually averages around 85 sometimes higher. Then jumps even more when I stand. It’s pretty uncomfortable. My symptoms can come on after I eat certain meals too. I haven’t had much of an appetite lately but I do try to eat smaller portions when I do eat. I have pulsing vision as well. I also have all kinds of visual disturbances.
I had multiple tests done and then they sent me for a tilt table test. I am not on any medications right now my doctor wanted me to try increasing water and salt intake before starting me on something. I am unable to function though so I called his office this week and he wants me to come in on Tuesday to talk about options. I can give you more information after that. It’s all so new to me too.
I have been dx with OI in the past, another kind of Dysautonomia/pots…however I still have my styloids, as I’m just learning h I have them now. I was hoping surgery would help that along with other stuff. Blood flow does cause it I hear
Hi Kandi,
In my case the POTS diagnosis came after my ES surgery so I’m not sure if one caused the other or if they were just 2 separate things. Once I was diagnosed with POTS I still had symptoms that were unaccounted for. I continued to push for answers seeing more and more specialists. Finally an Endocrinologist (the 3rd one I had seen) told me I had SEVERE vitamin deficiencies in iron, b12 and vitamin d. I was then put on prescription and regular supplements.
I cannot even begin to explain how much better I felt after a couple of months. I started to feel like a normal person again… my palpitations calmed down a great deal and the dizziness as well. Headaches got better as well.
I went for a check up after being supplemented for a few months and b12 and vitamin d levels were good but my body does not retain iron. So now I have to go for iron infusions.
If you read up on all of this, iron, b12 and vitamin d play a huge role in the functioning of your body. Iron and B12 deficiency cause palpitations and dizziness and can present like POTS.
These are easy tests that doctors can look for that often get overlooked.
I hope this is helpful and I hope you get some relief soon! I know how difficult it is and the quality of life or lack there of. 
Thinking of you!
Hi krista3,
It seems this is an old thread so I hope this reaches you. Along with ES, POTS, Ehlers Danlos and a ton of other things lol I have a dural AV FISTULA. Your symptoms really jumped out to me about the left side temporal and eye pain because those were the symptoms that I have and how they found the Dural AV FISTULA. Do you get white flashes in your peripheral vision or have visual issues floaters ect. ?
Hi zebra3586,
I have had white flashes in my peripheral vision & floaters. My ophthalmologist did many tests & said my vitreous humor was detaching from my retina. He sent me to a retina specialist for several appointments to make sure my retina didn’t tear/detach during the process. I was told that the vitreous humor might or might not completely detach but that my symptoms would stop at some point - which they did. I was also told that once it happened in one eye, it would be likely to happen in the other eye - which it did, exactly one month later. This occurrence does not permanently impair the vision. It is a somewhat common occurrence during our aging process as our bodies begin to "dry out."
I’m happy to say that neither of my retinas tore or detached & neither of my vitreous humors completely detached from my retinas either. I still have the extra floaters but the peripheral flashing lights have stopped.
Thanks for the response! All the eye doctors did NOTHING but dialate my eyes and look in them no tests at all. I’ve seen an optometrist, opthamologists and finally a neuro-opthomologist. She looked in my eyes and said my optic nerves are not inflamed and are healthy. She ordered an MRI to look for a pituitary tumor. They did find a tumor, but it’s a menigioma. They said they would keep an eye on it but not to worry. I then I went in for a second opinion (my Mom died of a brain tumor glioblastoma and uncle of brain cancer so I wasn’t taking chances) and they found what they believe is a dural AV fistula which can cause those symptoms. I went in for my consult for the cerebral angiogram they want to do and the surgeon came in a half an hour late because he was re-checking my imaging and found I also have Eagles Syndrome. I also have sojgrens syndrome so my mouth and eyes are really dry. So I don’t know what is causing the flashes, pain and pressure, it could be one of my million conditions or a combo lol. All I do know is I’m terrified of having the angiogram and surgery for the Eagles Syndrome and just want this over with. The surgeon said not having the surgery is not an option, both styloid processes are compressing my jugular veins and they’re already twice the size they should be and the blood flow has enlarged other veins in my brain. I’m sorry to drag on about it, just really scared. If you don’t mind me asking what test did they do on your eyes to diagnose you?
Hi Zebra3586,
I am so sorry to hear you are going through all of this. I have had visual disturbances in the past. The left sided pain and pressure in my head, eye and face was extremely bad before my surgery. The styloid was compressing my carotid and jugular vein. The visual disturbances were especially bad at that time.
Thanks Krista3,
You had the surgery then? Can you tell me about it and what to expect? I’m really scared of the angiogram because the conscious sedation does not work for me, it took three bone marrow biopsies to find that out. And don’t know what to expect for the styloidectomy. I know I’m not letting them do it internal though. Hopefully they won’t back out of the surgery cause they’ve not done this before where I live.
If you click on the gray HOME button at the top of this page, it will take you to a list where NEWBIES is one of the options. There is a ton of information on the Newbies link about ES & beyond.
Basically w/ external surgery, an incision is made in the side of your neck & the styloids are cut off as close to the skull as possible plus the stylohyoid ligaments are removed. Some surgeons make a bigger incision which goes from under your jaw up around the back side of the ear. This is a “face lift” incision (even though you aren’t getting a face lift). The surgery takes from 1-3 hours depending on how mixed up the nerves are w/ your styloids & ligaments. The external approach does allow for better overall access to the styloid process & better visability of nerve & vascular tissues. Some nerve damage will naturally occur because there are so many nerves in that area of the body. That said, our nerves do heal over time for the most part. I do still have some numbness along my jawline & in the area around one of my ES scars but I will say that numbness is no problem compared w/ the pain & other symptoms I had w/ ES.
Another thing that can happen is first bite syndrome which is not an uncommon side effect of neck surgeries in the area where the doctor will need to open your neck. FBS is a condition where the parotid gland becomes over stimulated when you first start eating & it hurts just for the first few bites of your meal. Once it stops hurting, it most likely won’t bother you again until the next time you eat. For most people, FBS goes away w/in the first year after surgery. In a few cases it doesn’t go all the way away but the symptoms become less painful as time goes on.
Overall, the residual nerve troubles I have as a result of 2 ES surgeries do not impact my life very much. Surgery for ES was a great choice in my case. You may also find that many of the symptoms you’re having that have been diagnosed as other illnesses will go away once your blood flow returns to normal.
If you’re seeing a surgeon who’s never done an ES surgery, ask if (s)he would be interested in talking to Dr. Samji or Cognetti to get their take on how they approach ES surgery. I would think a doctor “not in the know” would appreciate the wise counsel of one who is.
So I had my angiogram and saw the doctor. I’m very frustrated! First he tells me I need surgery for ES. NOW it’s I want to try you on a diuretic to see if that helps with the IH. So he’s trying to avoid surgery cause he doesn’t know if it’ll even help. I have very low BP with a very high heart rate from POTS. I’ve already been on countless BP meds and failed pn them. My cardiologist is going to have a fit if she finds out I’m on a diuretic. Then he wants to do a spinal tap if the diuretic fails to see if that helps with the IH. Has ANYONE had luck with diuretics helping with IH? He said that my styloids are not abnormally long and they only compress when my neck is all the way back or all the way forward. I should of known this was going to happen. Then he says the surgeon won’t do the surgery if I don’t quit smoking. Additionally he’s sending me in for an EEG for seizure like symptoms, and within four months more white spots have shown up on my MRI so he wants to repeat the MRI in three months instead of a year. Sorry for vent fest but I’m really upset. Suggestions, input advice anyone? Please
I can’t address all your questions, but I can tell you this - most surgeons who are not familiar or not very familiar w/ ES will discourage surgery & tell you they can’t guarantee surgery will help your symptoms then will recommend trying different medications to try to alleviate pain & symptoms. (In reality, every ES surgeon will tell you they can’t guarantee results but in actuality the majority of people who have ES surgery receive benefit from it.) The meds may “take the edge off” but the only real cure is surgery. It is very possible that at least part of your heart symptoms are related to the pressure your styloids put on your vascular tissues when your head is in the “wrong” positions. I had an issue with that myself before my first surgery. It did take a couple of months to subside post op, but I have had no problems since then. I think my vagus nerve was being compressed when my head was in certain positions. When I exercised hard, I would get winded & wouldn’t be able to catch my breath for quite a few minutes after I should have. My blood pressure would drop instead of staying elevated, & I would get very light-headed. This would last for an hour or more post exercise. It was pretty scary.
I see and agree. Is there anyone who has tried the diuretic Acetazolamide and had success?
I do agree with Isaiah, it’s not curing the problem… Maybe you could have a look at some IH forums to get more of an idea about the medications he’s suggesting, and I would definitely see if you can speak to the cardiologist before taking anything, if that’s what you decide. I’m no doctor, but surely a diuretic would make your BP even lower?!! Clearly your BP isn’t the problem causing the IH as it’s low… When I had symptoms of IH, the doctor mentioned the possibility of doing a spinal tap to see what the pressure was, but as soon as he saw the jugular compression on the contrast CT he was happy that it was the cause. It does make it tricky when you have several conditions together, but I would definitely try to get another opinion.
Feel free to vent- I’m not sure that we can be much help, but we do understand what you’re going through. Thinking of you…
Thanks guys, I did message my cardiologist last night to see what her thoughts were and what she thinks I should do. The drug sounds familiar to me like I’ve been tried on it in the past when they were going on the lower the blood pressure and the heart rate will go down theory. Which didn’t work lol. The spinal I’m thinking he really wants because of the new spots on my brain that showed up within the last four months in between MRI’s he mentioned being concerned it was MS. I’ll wait on my cardiologist and follow her advice. If the doctor is resistant to surgery I’ll schedule with this other doctor that actually treats Eagle’s Syndrome.
Sounds like you have a good plan!
Thanks! My cardiologist said I could try the medicine because it is a low dose. I took my first one today, the side effects suck!!! But I’ll try it for a week and see if I can cope with them. But I’m getting the surgery one way or another, I can’t stay on this med forever just to mask the real problem, it’s hard on the kidenys.