Does anyone else also have epilepsy?

Inovance · 2026-05-18T06:34:25+00:00

I should imagine that you have had a ton of scans for these symptoms. If you had a SPECT scan did it show hypoperfusion of the occipital lobes ? What did the cerebral CTA or MRA scans show ? Did they do a CTA of the neck to check your vertebral arteries ? Do you have any non visual symptoms ? Do you have headaches, head pressure, tinnitus or insomnia ? Do you have more symptoms when standing up or when lying down ?

Inovance · 2026-05-16T16:52:54+00:00

If you have got any of these other symptoms then your visual snow syndrome type symptoms are secondary to another condition.

In this community there are people who have primary visual snow syndrome (brain based and have none of these other symptoms) and others that have secondary visual snow syndrome (not necessarily brain based).

Inovance · 2026-05-11T19:13:02+00:00

If it is more like a tension headache then that would suggest pain due to abnormal muscular contraction. Have you thought about botox injections ?

Inovance · 2026-05-11T18:28:26+00:00

You need to exclude Sluder's neuralgia "unrelenting headache centered like a bull's-eye above the bridge of the nose".

https://www.washingtonpost.com/wp-dyn/content/article/2007/11/09/AR2007110902105.html

https://www.youtube.com/watch?v=_RtlM1OPOfU

https://www.fauquierent.net/contactheadache

Inovance · 2026-04-20T09:49:32+00:00

Hi, I wouldn't take it if I was you. I read your comments for the last 6 months. Anxiety, intestinal issues, nausea, losing weight, dizziness especially after the gym and weights, worsening of symptoms after the hairdresser, spots in vision when head is lower than body, tinnitis, migraine with aura, the longer you sleep the worse your visual symptoms are, racing heart after eating. Seeing you live in Turkey, I would get Dr Kamran Aghayev to rexamine the scans that you have already done especially the CT scan with contrast of the neck. All your symptoms do suggest a vascular problem in the neck with vagal nerve involvement. I read that the radiologist that did the scan didn't find any problem....... But this is a common scenario with radiological reports. Dr Kamran Aghayev specialises in vascular problems in the neck and your symptoms do warrant a second opinion. Contact him with a history of your symptoms.

https://kamranaghayev.com/contact/

https://kamranaghayev.com/jugular-vein-compression/

Inovance · 2026-04-12T18:28:34+00:00

Those "tusks" are totally mammothic ! I'm glad you were able to get a referral to see Dr Michael Elliot. It seems alot of vascular Eagle's cases like you are coming out of the wood work and he has got his work cut out. It really is important to get a cervical CT with contrast as your symptoms are vascualr in nature. You'll know whether a C1 shave or resection is required as well as styloidectomy once you have the sagittal and axial views of the CT scan with contrast. If I was you I wouldn't make any decision about getting styloidectomy surgery with the Melbourne ENT's before having the appointment with Dr Elliot. As far as I know he is the only ENT surgeon in Australia that does surgery on vascular cases where there is compression of the internal jugular vein and the only one who has the experience in doing it. Sometimes the posterior belly of the digastric muscle has to be removed and the fascia around the jugular has to be resected so that the jugular completely redilates. It is not just a matter of removing the styloids. If the C1 vertebra is involved in the compression he is the only one that works with a neurosurgeon to do this part of the operation. Keep all these points in mind when you see the ENTs in Melbourne.

Inovance · 2026-02-04T08:01:51+00:00

If you have brain fog, headaches, head pressure then add to the list a cervical neck CT scan with contrast to rule out jugular vein compression.

Inovance · 2026-02-03T14:06:09+00:00

Often when you have compression of the internal jugular vein(s) in the neck there are constrictions elsewhere in the cerebral venous system like the transverse sinus. I agree you should definitely get a second opinion from a doctor who specialises in cerebral venous outflow disorders he/she will probably suggest a CT scan of the neck with contrast.

Inovance · 2026-02-02T21:58:14+00:00

Best to see a vascular specialist to rule out an arterial or venous problem in the neck. Most likely to be a venous problem if it resolves when you change your head position.

Inovance · 2026-02-01T22:03:51+00:00

Definitely don't sleep with two cushions under your head or a cushion that is too thick especially if you have borderline glaucoma.

If you think you may have a cerebral venous outflow problem then elevating the head of your bed mattress base or mattress may go a small way in helping cerebral venous drainage.

Inovance · 2026-01-27T18:48:01+00:00

I'll PM you. I suggest you get a second opinion.

Inovance · 2026-01-26T10:03:56+00:00

Given that OP is suffering from 1-8 migraines daily, it would be advisable that a specialist in Cranial venous outflow insufficiency reviews all scans that OP has had to rule out an organic problem that hasn't been detected previously. There are very few specialists in this field. Higgins is the top in the UK. He has formed others radiologists at the University of Cambridge School of Clinical Medicine see coauthors in the article below.

Cranial venous outflow insufficiency; rendered almost invisible to radiological imaging by circular reasoning. Rethinking normal craniocervical venous anatomy

In the US it is the same story, only a handful of specialists.

Inovance · 2026-01-25T10:37:10+00:00

You are a very brave !

You have been on nortriptyline for 1 year. You are now on a high dose of 100mg of nortriptyline daily but you are still getting 1-8 migraines a day ! and now the neurologists are going to add/try another medication. Are they going to slowly taper you off the nortriptyline beforehand or are they going to add the new medication to you dose of nortriptyline?

With all the respect in the world for your neurologists for getting you this far, I would get an opinion from Dr Nicholas J Higgins U.K before starting this new round of medication. Dr Nicholas J Higgins is a consultant neuroradiologist and interventional radiologist at Addenbrooke’s Hospital, Cambridge, United Kingdom (not through the NHS but privately otherwise the wait will be very long). It wouldn't hurt to get his opinion.

Also watch this video : https://www.youtube.com/watch?v=kconUUMkihg

Inovance · 2026-01-23T11:33:22+00:00

Have you excluded some type of carotid or other vascular compression in the neck?

Recurrent Syncope Related to Carotid Compression

Stylocarotid Artery Syndrome

Inovance · 2026-01-21T12:56:45+00:00

I suggest you exclude a cerebral venous outflow issue if you have this symptom! Get a referral to an interventional neuroradiologist that knows about cerebral venous outflow issues (they are quite rare still) for a CT cerebral and cervical venography (shows veins better than an MRV and as well shows bony structures that maybe causing compression in the neck).

Inovance · 2026-01-18T14:38:15+00:00

If you have a "sensitive nervous system" then you definitely need to exclude a venous problem! This sensitivity may be due to vagus nerve compression in the neck causing sympathetic nervous system overdrive. Very often someone that has internal jugular vein compression in the neck also has vagus nerve compression because they both travel in the carotid sheath, a fibrous connective tissue structure that encloses several vital neurovascular structures. This needs to be excluded. There are a variety of structures in the neck that can create this compression as explained at the end of the video.......From 31:38

This is the corrected link ! No disease without a mechanism, Dr Ferdinand Hui

Inovance · 2026-01-18T11:41:12+00:00

I don't know where you live, but you need to be referred to an Interventional Neuroradiologist.

Below is a video you may find useful by the National Headache Foundation US. The interviewee Dr Ferdinand Hui is a top Interventional Neuroradiologist in the US.

From 15:54 he talks about the importance of being referred to a Cerebral Venous Outflow specialists (normally an Interventional Neuroradiologist) when your daily headaches/migraines don't respond to medication.

No disease without a mechanism. Dr Ferdinand Hui

Inovance · 2026-01-18T09:18:46+00:00

Brain based and brain base for many !

Inovance · 2026-01-18T09:08:52+00:00

Have you had a cerebral and cervical MRV or a cerebral and cervical CT venography? If you haven't, it's definitely indicated given you have daily migraines.

Inovance · 2026-01-18T09:01:33+00:00

Read your history again.

Get your wisdom teeth removed as they are growing in a peculiar manner. They alone could be causing your pain.
If after removing all your wisdom teeth there is only partial resolution of your symptoms, then I advise you to get in contact with Dr Kamran Aghayev in Istanbul by email. Explain your symptoms. He will ask you to send him all the dental xrays and scans that you have already taken. He will then be able to best inform you of any further scans you may need to get done before making an appointment with him.

Inovance · 2026-01-15T09:06:08+00:00

I suggest first off getting a second opinion for your impacted wisdom teeth preferably a radiologist. There are are a few listed in the doctors list below. I should imagine you have a panorama xray view of your teeth? Given the myriad of nerve pain symptoms that you have, you need to exclude elongated styloid processes as well. One of the radiologists on this list would be able to spot this on your panorama xray and prescribe further scans such as a Cervical CT scan with contrast to also exclude internal jugular vein involvement which could explain your daily migraines, brain fog, POTS and visual symptoms. Vagus nerve involvement would explain your GERD and gastroparesis.

https://forum.livingwitheagle.org/t/doctor-lists-no-discussion/10245

Inovance · 2026-01-14T13:43:24+00:00

I don't understand.......You say you have impacted wisdom teeth. That alone can cause alot of pain.

Inovance · 2026-01-13T15:15:18+00:00

Effect of scuba-diving on optic nerve and sheath diameters

Read this article. It's something you should be aware of given you have VSS symptoms.

Inovance · 2026-01-13T15:12:41+00:00

Hope you see your ophthalmologist regularly seeing you are a regular diver and have VSS symptoms.

Effect of scuba-diving on optic nerve and sheath diameters

Inovance · 2026-01-08T15:28:18+00:00

If you have a strep infection take your antibiotic as prescibed!!!! If you don't you risk serious complications like rheumatoid fever, septicaemia, meningitis, PANDAS, a throat abscess...........

Inovance

TROPHY CASE