Severe Sun Headache

For the past 3 summers (all summers post tick) I have gotten headachy and irritable at the beach. This summer actually was going a lot better until I was struck down with a throbbing pain which has repeated a few times since the beach and really impacts my mood, behavior and energy each time.

While I understand real healing is a long term process, in the near term is there any bandaid relief? Quality of life took a nose dive.

I get some help from kudzu and a supp called migrelief now. These headaches are different than any I have had before pre or post Lyme, including migraines I’ve had in the past.

Imitrex can interrupt the worst of an attack, although I have almost used my entire prescription and can’t get more until I see a neurologist. I suspect a new type of migraine or cluster headache, rather than vasculitis or stroke or anything like that. No confusion or loss of coordination or strength.

Tryptophan seems to increase head tension. So do Lyme herbs, making it difficult to continue treatment. My lymph seems a little sluggish. Bloodwork was mostly normal (HCT and MCHC were tenths outside of normal range). Sed rate and c reactive protein were both normal.




Since I am new here, I will add some background. My worst symptoms have typically revolves around the GI. Severe abdominal pain tracking along the ribs and drastic weight loss were my worst symptoms. When this all started I had few resources and could get no help from doctors. I started self treating with oil of oregano and proteolytic enzymes until I found a naturopath who could help. Assumption at the time was SiBO as I’ve never presented with typical Lyme symptoms. As treatment wore on and some classic sibo treatments backfired, we decided last year to treat as Lyme. Core herbs are:
Knotweed
Samento
Houttynia
Sida

With hepacaps and lymphagogue formula to help the body’s detox.

Other herbs and supplements rotate in and out per what my body seems to need.

I am mostly functional. I hold a demanding full time job and have a 2 month old baby at home. I am generally fine and continue to improve as long as I maintain a careful diet, don’t rev up doses too quick, and don’t overexert myself. This headache is new, different from how I have herxed in the past, and extremely debilitating.

Racer86 said...
For the past 3 summers (all summers post tick) I have gotten headachy and irritable at the beach. This summer actually was going a lot better until I was struck down with a throbbing pain which has repeated a few times since the beach and really impacts my mood, behavior and energy each time.

While I understand real healing is a long term process, in the near term is there any bandaid relief? Quality of life took a nose dive.

I get some help from kudzu and a supp called migrelief now. These headaches are different than any I have had before pre or post Lyme, including migraines I’ve had in the past.

Imitrex can interrupt the worst of an attack, although I have almost used my entire prescription and can’t get more until I see a neurologist. I suspect a new type of migraine or cluster headache, rather than vasculitis or stroke or anything like that. No confusion or loss of coordination or strength.

Tryptophan seems to increase head tension. So do Lyme herbs, making it difficult to continue treatment. My lymph seems a little sluggish. Bloodwork was mostly normal (HCT and MCHC were tenths outside of normal range). Sed rate and c reactive protein were both normal.




Since I am new here, I will add some background. My worst symptoms have typically revolves around the GI. Severe abdominal pain tracking along the ribs and drastic weight loss were my worst symptoms. When this all started I had few resources and could get no help from doctors. I started self treating with oil of oregano and proteolytic enzymes until I found a naturopath who could help. Assumption at the time was SiBO as I’ve never presented with typical Lyme symptoms. As treatment wore on and some classic sibo treatments backfired, we decided last year to treat as Lyme. Core herbs are:
Knotweed
Samento
Houttynia
Sida

With hepacaps and lymphagogue formula to help the body’s detox.

Other herbs and supplements rotate in and out per what my body seems to need.

I am mostly functional. I hold a demanding full time job and have a 2 month old baby at home. I am generally fine and continue to improve as long as I maintain a careful diet, don’t rev up doses too quick, and don’t overexert myself. This headache is new, different from how I have herxed in the past, and

I've had this amd it's freaking awful!!! I went to the beach and started to get a migraine and it was one of those days it was in the 90s. We left the beach early knowing I had a heat and light sensitivity which made the migraines worse. Once I drove home popped motrin etc and saw the lain was the same that's when i knew i was in trouble. I laid in the room on my bed closed the drapes, tv off, pure silence and all lights off. I tried to sleep it off or magnesium. This migraine lasted 3 days straight I couldn't cry anymore because crying made it more painful. Went to the emergency room and did a ct scan all it looked normal bt I knew dam well it felt like encephalitis or inflamed. This is before I knew I had lyme and bart. I believe bart is the culprit here. Especially because of the type of head pain it caused and it felt more intense than any "lyme headache" I've ever experienced or any herx. I do believe the heat kill off bacteria such as lyme also and I think the heat caused die off and herx reaction. 2 negative bart and lyme.tests through my docs office in a few months bt then positive for lyme and bart henslae through Igenex. 1 of my bart test were negative on Igenex bt other bart tests I ordered were positive. Something told me to order multiple tests instead of just " western blot" or FISH. Diet changes were the biggest game changer and now I'm able to.tolerate the heat much better although I can't say the same for people who ate on treatment at the moment. While taking doxy and certain abx wr aren't supposed to be in heat or sun.

Racer86 said...
For the past 3 summers (all summers post tick) I have gotten headachy and irritable at the beach. This summer actually was going a lot better until I was struck down with a throbbing pain which has repeated a few times since the beach and really impacts my mood, behavior and energy each time.

While I understand real healing is a long term process, in the near term is there any bandaid relief? Quality of life took a nose dive.

I get some help from kudzu and a supp called migrelief now. These headaches are different than any I have had before pre or post Lyme, including migraines I’ve had in the past.

Imitrex can interrupt the worst of an attack, although I have almost used my entire prescription and can’t get more until I see a neurologist. I suspect a new type of migraine or cluster headache, rather than vasculitis or stroke or anything like that. No confusion or loss of coordination or strength.

Tryptophan seems to increase head tension. So do Lyme herbs, making it difficult to continue treatment. My lymph seems a little sluggish. Bloodwork was mostly normal (HCT and MCHC were tenths outside of normal range). Sed rate and c reactive protein were both normal.




Since I am new here, I will add some background. My worst symptoms have typically revolves around the GI. Severe abdominal pain tracking along the ribs and drastic weight loss were my worst symptoms. When this all started I had few resources and could get no help from doctors. I started self treating with oil of oregano and proteolytic enzymes until I found a naturopath who could help. Assumption at the time was SiBO as I’ve never presented with typical Lyme symptoms. As treatment wore on and some classic sibo treatments backfired, we decided last year to treat as Lyme. Core herbs are:
Knotweed
Samento
Houttynia
Sida

With hepacaps and lymphagogue formula to help the body’s detox.

Other herbs and supplements rotate in and out per what my body seems to need.

I am mostly functional. I hold a demanding full time job and have a 2 month old baby at home. I am generally fine and continue to improve as long as I maintain a careful diet, don’t rev up doses too quick, and don’t overexert myself. This headache is new, different from how I have herxed in the past, and extremely debilitating.

Welcome to the forum!

saraeli said...
Two possibilities that come to mind are dehydration and mast cell activation syndrome. Sun and heat can trigger symptoms strongly for folks with MCAS, including bad headaches and irritability. For years I couldn't tolerate sun because of MCAS. Especially if you are taking antimicrobial treatment and herxing, I would consider MCAS as a possibility.

I'm glad to hear that you are mostly functional, and I'm sorry that your beach days are being ruined by these symptoms! Beach days are wonderful things....

For me , I wasn't on any type of abx or herbals when the beach headaches ramped up. I actually didn't even know I had bart at the time bt highly suspected it do to the debilitating headaches. Potassium also can do this. I'm allergic to bananas so I have no choice bt to take potassium pills which Im not thrilled about bt have no choice. I noticed a difference in head pressure and headaches. Sweating at the beach also depletes our electrolytes and then losing potassium can cause an onset migraine.

It's surprising that your naturopath would want positive tests before treating you for MCAS. The testing is unreliable because of the variable nature of the condition, so diagnosis can come from trying basic treatments and reducing common triggers, and seeing if symptoms improve. I was diagnosed because my MCAS symptoms went away when I started taking curcumin and quercetin and switched to a strict low-histamine diet. Perhaps now that lots of people with long-COVID are developing MCAS, more doctors will gain some awareness about it. I found Neil Nathan's book Toxic instrumental in helping me understand, identify, and treat MCAS.

I'm not trying to be pushy about MCAS if you don't think it's a part of the picture for you - some people don't have it! Just wanted to say lab testing isn't necessary for you to try some histamine management treatments and see what happens. For some people it's as simple as taking a Claritin each day, and the ensuing reduction in inflammation and sensitivity allows them to make progress with their health.

I agree with saraeli, the testing for mcas is unreliable. My mcas came back pretty much in good standing, yet I have anaphylaxis and am allergic to foods, pets , environmental crap, everything in the book and plus I've been prescribed an epi pen since like 9 yrs old. How can you have anaphylaxis or allergic to everything with normal mcas testing?!! I suffer from pots and dizziness amd that's how my mcas felt so the heat migraines were so different for me. I also was positive for rickettsia and only God knows when I got this because I tested 1:60 for Igenex which is early infection, or may or may not be positive or negative. Have you. Even tested through Igenex or?? I had over 20 negative tests for all tick born diseases with regular doctors until I used the Igenex lab. This saved not only my life bt also my sanity!!!