Sorry for the delayed response!! Yes I had the surgery back then and I had it internally. If I need to have another surgery they will do it externally.
I also meant to mention, I too have IH but it is intracranial hypotension and not hypertension. Which do you have? We are so similar with all that we have.
I have Intercrainal HYPERtension. I just tried my first dose today of the medicine and it drove me nuts. Skin tingling all over. But Iām trying to stick it out until I can have the surgery hoping it helps with the headaches. What other conditions do you have?
I see. I have had 2 spinal taps and a patch since I have CSF leaks. Have you had any spinal taps done to release fluid?
They tried to put me on a couple of different medicines for POTS but my body would not tolerate them. Have you had your vitamin levels checked? (Iron, b12, etc)?
I have IH, Eagle Syndrome, POTS, PCOS, Migraines/headaches, Vitamin deficiencies in D, B12 and Iron (Iron is my main issue as I have to get infusions because my body doesnāt retain the iron) and I feel like Iām leaving something out but I cannot think right now.
My daughter has PCOS. After quite a bit of research, she found info about cinnamon as a helper to relieve PCOS symptoms. She adds 1/2 tsp of ground cinnamon to her coffee in the morning & then consumes another 1/2 tsp at night sprinkled on applesauce or in a drink. Cinnamon has been shown to be good at helping to maintain blood sugar at healthy levels. It has helped her tremendously.
PCOS reacts like metabolic syndrome (even though itās not truly a form of metabolic syndrome) & thus diabetes meds like Metformin are prescribed to help control the symptoms. I have also read that gluten free & low to no sugar diets can help a lot, too, though she hasnāt chosen to go that route.
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Thank you so much for that information! I have never heard about the cinnamon so I will have to try it.
I am currently gluten free, vegetarian and pretty low sugar. I am trying to work my way to vegan to see if this helps my symptoms.
krista3,
It sounds like youāre definitely on the right track in taking care of your body. Veganism is worth a try, but I have a strong opinion about the detriments of going vegan. I have read & experienced via vegan friends that it is not a healthy long-term diet choice. Itās too difficult to get the many nutrients your body needs on a daily basis from only plant sources. Over time your health may suffer. Common side-effects of nutrient lack are hair loss, gum/tooth disease, migraine headaches, bone density loss, dry skin, etc. I recognize that there are people who are successfully vegan for many years without health troubles, but there are also many whose bodies donāt tolerate it well. Please listen to your body carefully if you go that route.
If you have access to a naturopathic or functional medicine m.d. in your area, that might be another resource as they tend to skip the prescriptions & work with you using more natural methods (like cinnamon). My daughter was first diagnosed by a naturopathic m.d. It is important for the naturopath or functional med. person to additionally be an m.d. so you have the balance of both practices.
I hope you find what works best for you! It is a life long journey.
So sorry krista3 I literally just read your last post! No I havnt had a spinal yet. Iām severe vitamin d deficienct my vitamin b is to high no doctor ever noticed that one. I canāt tolerate the meds for POTS either. I have Ehlers-Danlos disease and POTS/Dysautonomia is a given when you have that.
Did those symptoms resolve after your styloid was removed?
Hi @Calebp,
Do you mean the vascular related symptoms or the POTS?
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Either of them. And how long did it take to see a change?
@Calebp After my first surgery, I had pretty immediate relief from dizziness, high blood pressure and some pain and swelling. I could finally turn my neck to the left.
The POTS developed a few months after and I followed my doctorās instructions on increasing water and salt. They tried to put me on meds but I felt even worse. I also found out I was extremely deficient in iron, b12 and vit D so supplements for those issues ended up helping. It all took awhile to feel better. Iām still not 100% but I can at least function now.
I do need to have revision surgery on my left side as the doctor did not take enough off and I am having similar ES symptoms again and may eventually need my right side done too. Let me know if you have any other questions 
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That makes me super hopeful. I feel dissociated, like Iām here but Iām not. Idk if that makes sense 
, but if I could shake this dizziness and vision problems It would be awesome. But hopefully your revision goes well. How long was your styloids and did they grow at a weird angle?
@krista3 - Iām sorry to know youāre having symptoms again. If you do decide to have revision surgery, Dr. Hackman is in your area (unless youāve moved) & has done some successful ES revision surgeries. Itās hard to find doctors who are willing to do that.
@Calebp that āout of sorts/foggy feelingā makes perfect sense and I know exactly what you mean. I hope you find some relief. I forget the length of my left pre surgery and I canāt remember what they are now from my recent images. Iāll have to look back. My left was growing/is growing on an extreme angle to where my tonsil would be on that side. So it was actually sticking into my throat before surgery and compressing my carotid and jugular vein. Still very close to those arteries from recent imaging and why I still get dizziness here and there with certain movements.
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Hi @Isaiah_40_31! Thank you 
I actually just had a consult with him a couple of months back and he agreed to do surgery. I am going to see if I can put it off for a few months and maybe have it closer to the new year. He was wonderful and I felt very comfortable with him and his knowledge.
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Iām glad you had some relief, cause this stuff sucks. lol never wanted to get back to work so badly. But @krista3 how did Dr Hackman seem? He is another one I want to see, did he need a referral?
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And my doctor tried to do the pots protocol, Flucortisone, propranolol and salt increase. It did nothing but make it worse. I think because I already had intracranial hypertension and the salt and extra fluid did nothing but add pressure.
@Calebp Iām so sorry you are dealing with all this. I truly know what it feels like and yes it does suck!
For the IH have you had spinal taps and have they released any of the fluid?
For the POTS I ended up just increasing water and salt as directed but I didnāt feel much better. It wasnāt until I was supplemented for all of my deficiencies along with the water that I started to feel a little better. Did they check your iron, b12 and vitamin d?
Thank you! I really liked Dr. Hackman. I was initially going to travel to Philly to have Dr. Cognetti do my revision surgery. I met with him once and we have had video consults over the years. I decided to put surgery off since I was āokayā but having increasing issues the last year and came across Dr. Hackman. I met with him a few months back and I really liked him. I will have him do the surgery for sure when I am ready.
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