With my surgery date still many months out (although I’m hoping for a wait list opening before then!), I wanted to reach out and see if any of you suffering from jugular vein compression have found successful coping mechanisms prior to surgery in order to keep up with life. I’ll go ahead and relate what I’ve discovered on my own, but any and all recommendations on how to decrease symptoms and increase productivity would be appreciated.
I’m on blood thinners and taking Neurtryptolene, both of which definitely help, but both of which I’ll have to stop 5 days prior to surgery, and possibly sooner if I want to be available for a last minute surgery opening. I’ve also cut out gluten and dairy in my diet, as both seem to exacerbate my symptoms.
Keeping my head upright/neutral and neck loose as much as possible seems to lessen symptoms.
The less I bend over in a day, the better. I’m getting very good at squats!
If I can keep up a consistent, low level of activity and movement throughout the day, I feel better in the evening (difficult to do when I need to get work done as that’s mostly on a computer or manual labor).
Icing my neck at night before bed seems to lessen nighttime headaches.
Sleeping with my head elevated improves my ability to get any sleep.
Taking cold showers in the morning or during the day helps with focus, decreases pain and improves sleep
Eating small meals and snacking regularly seems to help. Filling my stomach too much or getting too hungry seems to worsen all symptoms.
Massaging my neck and shoulders (and calves for some reason no doctor has figured out) regularly with a massage gun seems to help a little.
Even with all those precautions, I still sometimes have very bad days or nights for no apparent reason. Frustratingly, it seems like the days I try to relax a little more (like on the weekends), I end up feeling far worse than days when I’m up and about doing simple things throughout the day. On the other hand, if I do just a little too much (like try to take a hike, play with kids, or really anything that raises my heart rate), I end up useless and in severe pain by early evening. On the other end of things, if I try to actually get 8 hours of work in on my computer in a single day, I find myself fighting brain fog, fatigue and pain only a few hours into it. If I fight through that and work anyway, I’m pretty much guaranteed to be in too much pain to sleep that night. Luckily I’m self employed and work from home, so I’ve been able to adjust my work schedule such that I can take a short walk every hour or two, but that system is severely limiting my billable hours and hence my income.
Anyone else out there in a similar situation have suggestions on other methods to help relieve JVC symptoms? Are there any stretches or exercises that help?
Hi, sorry to hear of your long wait for surgery and your daily struggles in the meantime. I was in a very similar situation myself awaiting surgery and adopted strategies to try and survive the wait. The wait is never easy. I will give it some thought and send a reply on anything else I think helped soon. Hoping you get an earlier surgery date. D
I had a long wait for surgery too, so I can sympathise with you, very hard for you juggling a job & family life…I don’t think I can add much more to your list though, I’m sorry! I ended up sleeping in a recliner before surgery as even when sleeping propped up in bed I would still feel awful. I did get prescribed amitriptyline for nerve pain which helped take the edge off the pain, I had to be careful to sit directly facing anyone/ TV etc as turning head was too painful, & couldn’t do any exercise other than walking. I had a prolapsed disc C5-C6, & saw a physiotherapist who gave me gentle exercises to do (chin tucks & gently turning your head each side, laying down with my head on a pillow), it didn’t really help with the vascular symptoms but helped with neck tension.
Hopefully others will chip in with their experiences, & hoping that you do get your surgery earlier, sending you a hug
Thanks for your replies! I figured there’s not much more to be done, but it’s always worth asking in case anyone in the community has found coping mechanisms that work better than those I’ve discovered.
Asking is free! We’re always here to answer when we have something worth sharing. I hope your symptoms give you breaks, as they sometimes do. I will pray for you to find other ways to manage them to help you get through your days till surgery.
Wow I could of wrote that, that’s exactly what I find helps me, and it really is like a balance to much or to little and you feel worse, I do find a heat blanket on my shoulders helps also, and I’m on a med to bring my bp down a bit that really helps, muscle relaxers were awesome but then my heart was having issues with them so I had to stop, gluten free didn’t help, to much sugar so I reduced my sugar intake and cut out all caffeine, I do a seated Pilates for seniors every morning helps keep me moving, walking is really tricky for me my head is always dizzy, and I do some pt for my tos, which in turn helps with the Eagles
My first suggestion is to get yourself a Viatom ring (via Amazon), cost about £ 150 - as it’s the best self- diagnostic/ self management tool I found. I am still using it in early post op stages. It will record your pulse & oxygen on app used on phone. You will then see when your pulse is rising (which will make your head worse) and oxygen too. You can set alarm levels (mine is heart rate below 60 and above 120 and oxygen below 90). Ring will vibrate on your finger when you are at alarm levels. If you pay attention to this data you will soon identify some common triggers that are making you worse.
Examples might be head rotation or flexion (eg looking down at keyboard/phone). You can then avoid/manage triggers better.
I made notes on key changes so I could track issues to triggers (eat, walk, tv etc). I use tag function on my Oura ring (tracks sleep) but you can use a bit of paper or notes on phone etc.
For me managing my pulse rate up to limit of mid 70s helped me manage head better. Once pulse reaches 80s I am headed for trouble, over 90s (unless walking slowly) means big head issues for me. Blood is going in head faster than can escape I think, so building pressure/pain. For me as pulse rises and fluid builds my oxygen levels also start to fall a bit. So I use rising heart rates and oxygen falling as early warning signs and take action before crisis stage.
I agree with all your other measures. I’d add staying cool- our body pumps blood faster to cool us if we get hot. Stick to walking or other non-aerobic work, higher aerobic work will push extra blood in head to get trapped there-increasing head pressure and pain.
Photobiomodulation- Novothor machine ( like sunbed but not for tanning) is very good and really helped me before operations to cope - Thor UK has map on website - mostly in USA/Canada. May be others. Consider a home use device like Helios or Joovv, they are very good at helping to move fluids in body. Don’t use it on your head- use it to draw fluids lower down your body. Helps nerve pain too.
Lymphatic drainage - we have too much fluid trapped in our heads and doing lymph work can reduce fluids in head. It will return but it provides relief. Vital after surgery in my view. Go on Vodder.com website and therapist tab to find qualified person near you. Try to find one with physiomed Hivamat 200 machine as it’s deep ossilation is more effective than just manual work. Watch what they do and think what you can copy. They do train you how to help yourself with manual drainage work. I only found out about this after surgery but believe it would have helped me before. They can do manual work on your head to move fluids.
I am just trying a Bodyflow hire machine (german) now. I believe it can pull fluids from my head while upright when used on back but still in early days. If does could help when used on computer time.
Hope some of those ideas prove helpful if you decide to try them. Keep strong. D
Ps. Our lymph system has no pump and relies on movement to help lymph system work. That May be why lots of computer time or slower days can make you feel worse. I always know mornings for me may be worst after lie inactive in bed. At my worst I used to set alarm every 3 hours overnight & use photobiomodulation & movements (deep abdominal breathing, pull in core, tighten and relax muscles to move fluids down from head).
Pps. Leg/calf symptoms. I have figured out that where fluid gets stuck in skull/brain can affect different body parts. So today right hip struggled going upstairs. Yesterday my right index finger was abnormal. It’s random. But if you treat body parts that hurts, I think it helps fluid stuck in brain - it’s a two way system. Good news for us guys as we can help what goes on inside our skull/brains in non- interventional way. Not something I say to medics for fear they will mark me down as mad.
Final idea- soak your feet 3 times a week in Epsom salts with magnesium -it helps your brain to cope better. Advice of medic. D
Your list of things that help is pretty much exactly the same as mine! I have bilateral jugular compression too.
The only additional thing that has helped me is addressing my POTS (salt loading, compression clothing, and then some drugs prescribed by cardiologist). It’s really helped my overall symptoms. Obviously only relevant if you also have POTS and haven’t yet addressed it!
I think pretty much you covered but we have
discussed what helps with IJV in previous threads (see he 2 links below) One is from our friend @TheDude and one is from me. I would also add to avoid Vitamin A as it increases the production of CSF fluid. Since our drainage is impaired, if you are taking multivitamins with high dose of Vitamin A, you might be increasing the CSF production and subsequently will increase inter-cranial pressure.
Final point- helping to calm your central nervous system. Our vagus (control of major body functions) & other nerves can get badly affected. You may already have chosen ways to relax yourself- if so use them.
In case helps I have used meditation (Headspace app has free trail), calm -there are others. It takes a while to master so be patient with yourself.
Voo breathing - helps to calm vagus nerve- are demos online. Deep abdominal breathing but push rib cage out at sides too- it’s such a big muscle it helps move lymph. Alternate nostril nose breathing- one nostril might not work but just try gently to extent comfortable/able.
I use NuCalm app to calm CNS- was developed fir PTSD sufferers- I get it free as did original trial but can do month by month subscription I think. GABA in bio signal professing disc helps our brains.
Guess that’s enough from me. Hope some of ideas help. D
I’ve been struggling with what is looking to be IJV compression for years (new to forums, not diagnosed). Since everything single thing on your list has helped me before, I’ll add what I’ve learned:
Lying down on back with neck up seems to really help in the short term, but each of the three times I’ve done this regularly I’ve gotten much worse after a couple of weeks, maybe because of a tightening neck.
Reducing inflammation really seems to help. Lots of turmeric and blueberries and greens, as well as avoiding really greasy foods and processed foods can make a difference. (Some of the things you originally suggested really help with inflammation).
Pushing the lower jaw forwards, and maybe to the side if things are worse to either the left or right (note that moving your jaw to the wrong side could make things worse). I think this just makes more space. I’m getting dental work done to allow me to push my lower jaw even more forward at rest, and it seems to be making a difference.
GENTLY massaging the area of the hyoid, in the upper neck, to loosen those muscles. Like the lower jaw, pushing things to one side also really helps me, at least as long as I hold it there. Be very careful though, and consider getting professional guidance first, this area is really sensitive.
Yoga, especially sun salutation. I find I can usually think much better after a few rounds of this motion.
Avoiding a chemical called Tartrazine, a yellow food dye. If I can remember correctly, it can cause vasospasms and vascular inflammation which you really do not want.
Hey Mclean, welcome to the forum! You just solved a mystery for me. =) I had noticed that my symptoms always flared when I ate yellow curry at my favorite Thai restaurant, so I simply stopped ordering it. Now I think I can safely assume they add yellow food dye to their curry!
Also, adding to the list of do’s and don’ts…it took me a long time to admit, but taking a hot bath always makes my symptoms worse. This is intensely frustrating since when I’m feeling really bad all I want to do is relax in a nice hot bath. It always feels great at the time, but I pay for it later with the worst of my head pain waking me from sleep.
And, what PatientD wrote above was recently confirmed by my doctor…don’t let your heart rate get above 120bpm. This is nearly impossible at times with how my heart rate jumps around with minimal movement, but I did recently get a heart rate monitor and wear it when I go for a walk or do light exercise. Tracking my heart rate and keeping it below 120 as much as possible has definitely decreased the severity and frequency of head pain.