Brain fog, dizziness, vision problems, head pressure, headache PLEASE HELP

I’m so sorry jasmine, unfortunately I’ve had this for 2 years now and it’s worse than ever for me.  

How long have you been experiencing the symptoms? Have you seen an ent or neurologist and had any vestibular and balance testing done? 

I just turned 25 and it’s become so severely debilitating I barely do anything at all, I share what you’re going through so much 😞

Hey jasmin if i was you i would stop reading so much internet things. If it were a tumor they would have found it right away. Tumors and and aneurysm is what they look for most i come from a familly of 15 doctors. Try getting more sleep and also try going to the gym or playing any tyoe of sport its going to make you even more dizzy because if you are out of shape your goibg to feel that everyone is looking at you and will make you more anxious. Just give it a try make more freinds and just letting you know its better if you stop thinking your dying and live we are all going to die. I know your young just relax if you dont like your job or studying then its just not for you look for something else. Feel haooy with yourself there are other people laying down in the hospital with tumors and aren't that afraid the way you are hope i can help you i started feeling the way you did at 19 and im 29 so that means my tumor is 10 years now lol you won't feel like that anymore if you do what i told you to do. Also if you can let go of your phone for a while. All these symptoms on young people is the phone to blame. well good luck hooe you do better and have fun

This worries me a lot because I have a blood disorder called factor v Leiden, and it’s a clothing disorder 

I have Factor V Leiden too. I am on lovenox prophylactic for a prior PE in my last pregnancy. This pregnancy just went through a thing. I am having my c-section Thurs. I was actually having really bad symptoms and went to the er. They did an MRI, thought they found a 6 mm clot in my head CVST. They transported me to OSU hospital and had me on a heparin drip for 3 days when the neurologist came in and said that they no longer think it's a clot but think it's a vascular malformation. I have radiology reports saying it wasn't always there but it's from a different network. I've since seen 3 different neurologists at other ers to get second opinion. They are all saying it's been there but I feel like something happened...they can't do a scan with contrast until baby is out so there is no way to know for sure and they won't up my blood thinner without concrete evidence! So, basically I've been so stressed out and having odd symptoms. How is your pregnancy going? Do you take lovenox injections too?

That's so crazy that we both have this..I wonder if our blood could be causing all of this...

I do not take lovenox as they said they don’t want to start me on it because I haven’t had a blood clot yet, so I have to go in once a week to check my levels and have had a few ultrasounds every couple months on legs and arms. Birth control was always an issue for me because of the factor v so I was never able to be on it. They’ve just been monitoring me extremely close and I’m considered “high risk” 

Right now I'm on low carb but I'm doing intermittent fasting today and then I hope to transition back to keto. I will say the only times I felt almost like my normal self again was when I was doing an extended water fast. I have also had success on keto but the water fast had much more of an impact. I do tend to fall in and out of diets since it's a willpower struggle. The negative part of being on these diets is when I eat something that I'm sensitive to I have a much strong autoimmune response than if I was on a less restrictive diet. But right now I really need to be thinking clearly (just lost my main source of income and need to find new work) so I have more drive to stay disciplined.

Are you on a specific diet? I'm always experimenting so I'd be interested to hear what works for you.

Thanks for the info. My oral surgeon is treating me for TMJ but it doesn't seem to be helping much with the symptoms. I did try physical therapy but it seemed like a waste of $$ (they would just have me lie down with a hot towel wrap for 10 minutes and then use ultrasound therapy). After 3-4 weeks I discontinued it. I still wear the splint at night but I haven't noticed a huge benefit yet like you mentioned.

I'm considering going to The Piper Clinic which is close to where I live. They seem to have a good reputation for treating severe cases of TMJ.

My neuros haven't considered looking at my neck. I hope that's not the case for me too but I might look into it if the TMJ treatment doesn't provide relief. Thanks for sharing and hope you can get the treatment you need now.

I would love to hear any breakthroughs you’ve had and anything that has helped! Even if I never go back to 100% normal, I’d love to even just get to like 75 %. 

I’ve heard horrible things about Lymes disease and different systems it can attack in your body. 

Definitely all the symptoms everyone here experience are related to vestibular system, visual system,  or some other sensory or central nervous system issue (with multiple cases of neck, jaw, and autoimmune disease issues as well) 

It’s crazy how we can all experience the same types of symptoms that are so debilitating. I hate the derealization/ depersonalization, I’ve had it 24/7 for the past 2 years it’s awful 

Hi stoic

i think you should see specialists for Vestibular issues.  If you are seeing a regular Neorologist or ENT- you may not get anywhere.  Plus- a PT who specializes in Vestibular issues.  They are out there but you really need to research to find one. I also think you should get double checked for Lyme disease again.  When I was in the hospital with the vertigo and brain fog- I was told by 2 professionals that these symptoms could be related to Lyme disease.  I had to fight for the blood test- in a weird way I was hoping it would come back positive because then I would have an answer.  It was negative.  I am being treated for Vestibular migraines right now- I am on meds.  And my brain fog is gone.  I still get a little dizzy here and there but I have my life back somewhat.  Look it up and see if any of the symptoms match yours.  What I learned from the vestibular PT is that I had to keep busy, working and doing as much as possible to retrain my brain.  I can't imagine what you have gone thru- I have been going thru this since May and it has changed my life.  Keep pushing the doctors and if you find one that is dismissive- get out of there.  I've changed doctors a few times.  I have had to ask for everything.  One Nuero said I just might be disabled forever! She did nothing to help me. So now I have an appointment with the director of the vestibular clinic in my area at the end of the month.  Keep your brain active even though it's exhausting to move around just a little bit.  

Thanks it's been recommended I see a Vestibular PT. What meds are you on for the vestibular migraines? Since I've started taking the meds I mentioned earlier in my post I've noticed my brain fog is MUCH better. It's just my other symptoms are so debilitating I can't do much. The ear fullness and blurred vision are really debilitating in particular.

  I was reading your reply’s I Read that you are on vestibular migraine medication? What are you on ? And what are your symptoms? And how long have you been getting symptoms?  I been on this website for 4 months now I had all mostly the same symptoms as Elise along with derealization but I believe the derealization is gone now I just feel drunkness 24/7 like wonky everyday not my self my vision is all messed up to almost as if I’m wearing the wrong prescription I get really bad migraines I always have since as Long as I can remember I am 26 year old female . I also am always tired I wake up like I almost have a hang over everyday besides the drinking I’ve changed my diet it’s been almost 3 weeks now I’ve had every test possible from mri, ekg, eeg, multiple blood test saw a ENT he thinks it’s vestibular migraines so my doctor put me on Nortriptyline 10mg it’s been a week in a half since I been on it .. waitng to see a nueroligist also. 

    Yolanda 

What are your symptoms ? How long have you been getting them? Are

You on any medication for vestibular migraines . ?

Thanks Elise. I'm sorry to hear you're still struggling. I haven't had any major medical breakthroughs. The meds I'm on help with the brain fog but my other symptoms are so debilitating I can't do much with my newfound clarity.

I've also started to get that depersonalized sensation again like I'm detached from reality. I still think the brain fog is the worst symptom for me since can't even hold a conversation when it's really bad but the detachment is making me very depressed.

I'm going to look more into TMJ and vestibular therapy. Given my symptoms that seems like the best route for me right now.

Hi yolanda. I'm actually on meds for my hemifacial spasms and nerve pain. I'm on Gabapentin, Baclofen, and Carbamazepine. It's hard to say which has been the most helpful but I started the Carbamazepine last and that seems to have given me the most benefit with this combination. I would recommend consulting with your neuro first. You can find more info on my medical history in my original post. Goodluck.

Hi Stoic and Elise, 

yes, I just started a new diet and it seems to work well. I was always low carb, low fat, no sugar, no caffeine, no alcohol etc. to get my symptoms under control after I had many problems with my stomach. I think I healed my stomach with this diet and I was almost on the right track, but I was missing the essential animal fats and that is giving me the brain fog. I read a book about migraines and triggers... and this guy was pretty honest. He said that human mankind was not meant to eat grains and especially not gluten and that we were meant to eat an ancestral diet. He talks about Lectins that are bad, sugar and trans fat. Also he thinks that this hype about the plant fats (Omega 6)  is also wrong because we are raising our ratio from Omega 3 ( i.e. from Salmon etc.) to 25:1 instead of what is normal to 1:1 or 2:1. So we need to get the Omega 6 down.

 I am Gluten free and eating animal products (butter, meat etc. and I started eating smoked salmon) and products with saturated fats (coconut oil in my oatmeal), vegetables, drink lots of water but avoid all the products that are mass produced to feed the civilization- he blames all those for all the civilization illnesses like diabetes, obesity etc. And to be honest. It makes sense. 

he also talks about the hypothalamus and since I have always head pressure up on the top of my head and I am very sensitive there, I think it's all coming from there - it's an inflammation because of all the triggers (see below) and the wrong diet..

In addition he talks about the sleep pattern and what the body needs.. And that is enough sleep.. and especially the sleep before midnight, plus exercise is very important.. at least walking 30 min at day..

Also his view of getting migraines was pretty good. I honestly think what I have could be a chronic migraine. My first doc suggested that. And all my symptoms are going this way but I was never aware of it... I have the sensitivity to noise, light, sometimes dark things in front of my eyes, brain fog, dizziness (especially after eating salt and a lack of sleep), don't like crowded rooms etc. 

My personal triggers for my symptoms to get worse are definitely not eating right, not eating on time, going to bed too late, too much screen time, sometimes caffeine, sometimes alcohol, not drinking enough water throughout the day, MSG, citrus and stress

And after reading the book I finally understand how migraines develop. It's never just one thing that triggers it, but always many things that come together over the last couple of days and then just reach their boiling point.. Just a little orange juice could top it and you feel the worst...

I still take the aloe vera that makes me feel very good and probiotics. Will keep you updated : ) 

Thanks CTh. I've been trying to heal my stomach for years. The antibiotics I took for the lyme nuked my microbiome and I've developed sensitivities to just about every food it seems. I eat a lot of saturated fats esp from eggs, butter, coconut oil, and meats. Not so much cheese since I might be sensitive to the molds. I try to avoid carbs but i do cheat now and again.

I tend to sleep probably too much but you're right about the timing of your sleep. If I go to sleep after midnight and wake up after 8am I have terrible grogginess that lasts for hours and throws me off the entire day. But if I wake up before 7am I'm much more alert and can almost spring right out of bed. I used to wake up between 4-5am and it was the most productive I've been in the last several years. Then I got a contract job with a company in Tokyo which kept me up late and really messed up my schedule.

You seem to be on to something with the migraines. I've also observed that if I'm very disciplined I'll start to feel better to the point where I think I can get away with a little. Maybe I have a drink or eat some pizza or skip exercising. And I can usually get away with it but after awhile it seems to boil over and I have a huge relapse of symptoms.

I haven't used aloe vera before so I might look into it. I haven't had much success with probiotics. Maybe I wasn't get the right strains. Which do you recommend?

Hi, you should try the diet am doing right now.. I haven't felt better in a long time.. and it looks like you are on the track already.. so I put it together again.. 

Key is to avoid grains, especially gluten (they have phytic acid and that is called an anti-nutrient) and  sugar.  Eat lots of healthy vegetables and also healthy fatty foods like avocado, salmon, coconut oils, butter etc. And yeah, stay away from pizza (I totally get it though and I was falling for it all the time when I felt better... BUT I won't anymore..)

For the probiotics, I use the RAW from a specific brand. 85 billion live cultures 32 different strains. But make sure if you are not used to probiotics that they kind of have a "cleansing" effect and you could get bloating and diarrhea in the beginning - start slowly and with small amounts.

And check also your water. Do you drink filtered water? If so you need to add mineral drops to your water. And drink enough water : )

And for your stomach - I take Calcium/Magnesium pills (500mg) and that helped me very much, also the aloe vera 10000mg (all of this is also making your stool softer.. so don't be surprised) And I loove Kefir (with no flavor). I drink it and it almost gives me an instant relief. 

Hope this helps : )

?

I am on nortriptyline which I noticed right away was helpful. I also was prescribed a beta blocker meteopropol (could be spelled wrong) my blood pressure was high.  And I researched the norotriptiline.  I am on 20 mg a day- what I saw is that most people are on a higher dosage. My ENT prescribed it and doesn't want to increase it since I have this appointment on the 24th.  I'm hoping that it gets increased and that it wipes out all my symptoms.  I have come to terms that I will just have this condition forever. But I am ok with it- as long as I continue to get better.  When I was told it's Vestibular nueritis- I was so discouraged reading other people had it for years and not getting better. What meds are you taking? You really should do the vestibular PT- it was very helpful- she has been working on retraining my brain.  Following x back and forth.  When I first started I couldn't comprehend what she was asking.  We also have been working on balance.  She told me that there aren't many that specialize in this so if you find one- really think about trying it. It was nice to have someone who listened and understood what I was feeling.

Hi hmoosey. I saw my ENT this week and he referred me to a vestibular rehab clinic not far from me. Hopefully I'll see the same benefits you've been experiencing.

Right now I'm on Gabapentin, Baclofen, and Carbamazepine and I take them twice a day. This combination has helped with the pain and spasming I was experiencing, and it's also greatly reduced my brain fog. For me the Carbamazepine made the biggest difference.

Been 3 weeks now I feel no difference .